Advice needed for pain during recovery

My husband completed his treatment (35 radiation and 6/7 Cetuximab) for SSC BOT HPV+ on November 21. At week 8 of his recovery he started experiencing sensitivity in his skin on his upper body, including the top of his head. He does not have a rash or anything visible. He’s really tired and cold. He was doing great with his recovery until after his 2 month checkup last week. They scoped him at that checkup and he has been congested and having trouble breathing through his nose ever since. 

Did any of you experience anything like this? Is this normal? My husband isn’t complaining, but isn’t feeling good. I am trying to decide whether I should check in with his doctor with these symptoms. He doesn’t have a fever. Thanks for all your help! This site has been my lifeline.

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Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    edited January 2018 #2

    Christine,

    I am sorry to read about the discomfort your husband is enduring. Each of us recover in a different way and have our own issues although many are similar in nature. You mentioned Fatigue and Cold, I too had these same issues. My Radiation Oncologist told me that Fatigue issues could last up to one year, mine lasted a little longer than that. 

    I had tingling all around my upper chest, neck and sides of my face for some time. Mucus was an issue for several months and I tried to drink a lot of fluids other than milk to try and thin the mucus. Dairy products contribute to the mucus, some here have suggested taking Mucinex, I used the Baking Soda and Salt solution. He may have unfortunately gotten a head cold during his recovery. 

    We feel the full effects of the Treatments for a period of time ranging anywhere between 4-8 weeks before we slowly start feeling better. Some days it will feel like we take one step forward and two steps back, but measure the improvement in weeks, not days. Treatments are harsh so the recovery takes time. 

    My Best to Both of You and Everyone Here

  • Mavish
    Mavish Member Posts: 84 Member
    Hi Christine

    I would check with his doctor. What you are mentioning is not common Good luck! 

  • OKCnative
    OKCnative Member Posts: 326 Member
    Actually I did experience

    Actually I did experience this and I think I posted about it when it occurred. I was tender to the touch on most areas where I had a lot of hair (chest and head) and a little on my back. Sort of like a sun burn feeling.

    My doctors said this was not overly common but still normal. 

    I mainly only noticed it when putting on t-shirts, working out (shirt sliding up and down) and when I shampooed by hair.

    I just ignored it and a few weeks later it went away.

  • christine2080
    christine2080 Member Posts: 71
    OKCnative said:

    Actually I did experience

    Actually I did experience this and I think I posted about it when it occurred. I was tender to the touch on most areas where I had a lot of hair (chest and head) and a little on my back. Sort of like a sun burn feeling.

    My doctors said this was not overly common but still normal. 

    I mainly only noticed it when putting on t-shirts, working out (shirt sliding up and down) and when I shampooed by hair.

    I just ignored it and a few weeks later it went away.

    Thanks, OKCnative. Today we

    Thanks, OKCnative. Today we noticed that he also has a rash on his abdomen. All of this started happening last week while we were submerged by a foot of snow. We’re just now able to get out of our driveway today. I plan to call his doctors (nurses) tomorrow to see what they think. He has recently started taking zinc supplements & I was curious if they might be to blame for the rash & increased skin sensitivity.

  • ByeByeCancer
    ByeByeCancer Member Posts: 54 Member
    Hey. let us know what the

    Hey. let us know what the doctor says.  Hopefully these are short lived side effects.  Brad hasn't had the skin sensitivity but he does say he is cold all the time.  Also gets tired really easily too. 

  • christine2080
    christine2080 Member Posts: 71
    edited January 2018 #7
    Thanks, ByeByeCancer. Craig

    Thanks, ByeByeCancer. Craig had been much colder than he ever was. Undoubtedly due to all the lost muscle & weight. He’s also been very low energy this week ( lower than the last few weeks). I will update my post when I know something.

  • christine2080
    christine2080 Member Posts: 71
    Update

    My husband has a cold. It’s crazy because it do look like a cold that he or I have ever had. His symptoms are so much more intense- body aches and chills are the main symptoms. I wonder how long it will last?!

  • Frances_S
    Frances_S Member Posts: 54
    My husband has been very cold

    My husband has been very cold since his treatment. He too lost a lot of weight and muscle. His hands an feet are so cold at times. I know when someone goes through treatment, the common cold can be severe because of a low immune system. It can also take a long time to clear up. Be prepared to take him back to the doctor if it lingers to long, you would not want it to turn into pneumonia.

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    Something Else?

    It sounds more like the flu to me. I got it this year for the first time in over 30 years.  And yes, I get a flu shot every year.  Body aches and pains are due to a fever most of the time.  Has he had a fever?  Either way, treatment is the same. Lot's of liquids and take some Tylenol Extreme Cold and Flu medication or something like it for a cold or flu.  It always helps me feel better. Dayquil is another good one.

    This is the last thing he needs right now.  Hope he starts feeling better soon.

  • christine2080
    christine2080 Member Posts: 71
    Cold or flu

    Tommyodavey, I have been taking his temperature several times a day and he doesn’t have a fever (at all). He’s got 10 days of herbs from the acupuncturist to bolster his immune system and he’s taking Advil for pain. I can’t get him to take Tylenol. We’re wondering if some of his pain might be nerve pain caused by the treatment? He has Gabapentin for nerve pain, but doesn’t like the way it makes him feel. 

  • Curlyn
    Curlyn Member Posts: 189
    edited January 2018 #12
    Hi Christine, you mentioned

    Hi Christine, you mentioned rash and zinc supplements can cause rash. Were the herbs and zinc prescribed together, in consideration of other meds/chemo taken? Also, did you consider a mild case of shingles? As for cold symptoms, could be just a virus.Hope he is feeling better today.

  • christine2080
    christine2080 Member Posts: 71
    edited January 2018 #13
    Curlyn, I’m glad you

    Curlyn, I’m glad you mentioned zinc. That was what I thought might be causing the rash (which is almost gone) since it appeared within days of beginning the zinc. I think he’s doing better even though he’s still not doing as well as he had been.

  • Curlyn
    Curlyn Member Posts: 189
    edited January 2018 #14

    Curlyn, I’m glad you

    Curlyn, I’m glad you mentioned zinc. That was what I thought might be causing the rash (which is almost gone) since it appeared within days of beginning the zinc. I think he’s doing better even though he’s still not doing as well as he had been.

    So glad the rash is subsiding

    So glad the rash is subsiding. It's been 10 weeks since my treatment. I am feeling so much stronger, better hydrated, and eating everything. I will say that it only seems to take one bad event, one tiring day to throw you off and seemingly take you back a step. When I went back to the gym (literally dragged there by myself and friends) I felt revitalized from the terrific mental boost.  Others have posted that you have to force yourself out there but it is so worth it. Hopefully, hubby will get into the swing of things with nicer weather in next few months. *PS. I keep meaning to say this, since I haven't seen it mentioned, but dizziness was a big thing for me. It always reminded me to stay well hydrated, and if I wasn't, it was a miserable feeling.

  • dwp155
    dwp155 Member Posts: 30
    Hang in there!

    * weeks post treatment and cold is normal for me since treatment.  Weight loss and muscle loss are the biggest contributors.  I have rashes that pop up and down and have treating them with clobetisol - prescription from my dermotologist.  It seems like a different symptom each day - but we are alive and starting a new life.  I am sleeping 12 hours a night but no naps and I am walking 15 minutes every day and have started yoga twice a week, but practicing easy does it.  I had a big day Saturday 2 weeks ago, I was up 16 hours and it took me 3 days to recover. It really is pay to play.

  • Beatitx3
    Beatitx3 Member Posts: 2
    Thank you Thank you

    I finished my thirty-five head and neck radiation treatments seven weeks ago. I thought I had escaped the foretold side effects which the staff told me begin two to three weeks after the treatment finished.  Was I wrong!!!  It started at five and one half weeks.  The fatique is unreal!  I am normally a very high energy person, and now, all of I want to do is sleep.  I thought I was crazy when my skin on both my arms, my upper back, and my scalp began to tingle and feel like a sunburn.  No rash or irritation just super-sensitive to clothing, water, touch.  Glad to find out I'm not crazy 

  • christine2080
    christine2080 Member Posts: 71
    I love this community!

    Thank you so much! I worry constantly that the cancer has returned. It’s reassuring to hear that the symptoms my husband is experiencing are not isolated to just him. He is still really fatigued, but is managing to take a 15-20 minute walk with me each day. The rash on his stomach is almost gone and he can taste most things. He describes taste as being muted- he says about 20% of the taste comes through. Phlegm is still thick & dry mouth is constant.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    Fatigue and cold...

    Hi Christine,  I'm 9 months out from radiation (no chemo) and I have been cold and fatigued a little bit since.  I dropped about 20 lbs and my wife says I'm cold because I'm so skinny...which isn't true (185lbs, 6ft tall)...but I think there certainly is some truth to it.  I am just chilled all the time...  Only recently have I been a little fatigued...but I think I might be fighting off a cold or something.  Cetuximab has a known rash side effect but that's during treatment.  I don't know whether or not there is any incidence of a late effect rash with it.  You'd have to ask your oncologist.

    The most frustrating thing about recovery so far for me is that it constantly evolves.  While you would think that there would just be this constant yet gradual return to greatness, that's just not true.  My body seems to go through good days and bad days...and things like colds just hit you differently now.  So you are left wondering....wait, I could have a cold..but it feels different.  I have swelling here and that's never happened before...  So you end up down at your cancer center with your radiation oncologist smiling at you saying "Brandon, you're fine...but let's scope you anyway so you feel better."  True story, happened yesterday (I happen to work at the hospital where I was treated so I can just walk down there...they love that).

    Fatigue is a well documented side effect that can come whenever it wants to...they don't know too much about why but think it's linked to inflammation...which makes a lot of sense since our bodies are totally inflamed and healing...

    At any rate, it sounds like you're taking good care of him...sometimes that's the best medicine.  :-)

  • christine2080
    christine2080 Member Posts: 71
    johnsonbl said:

    Fatigue and cold...

    Hi Christine,  I'm 9 months out from radiation (no chemo) and I have been cold and fatigued a little bit since.  I dropped about 20 lbs and my wife says I'm cold because I'm so skinny...which isn't true (185lbs, 6ft tall)...but I think there certainly is some truth to it.  I am just chilled all the time...  Only recently have I been a little fatigued...but I think I might be fighting off a cold or something.  Cetuximab has a known rash side effect but that's during treatment.  I don't know whether or not there is any incidence of a late effect rash with it.  You'd have to ask your oncologist.

    The most frustrating thing about recovery so far for me is that it constantly evolves.  While you would think that there would just be this constant yet gradual return to greatness, that's just not true.  My body seems to go through good days and bad days...and things like colds just hit you differently now.  So you are left wondering....wait, I could have a cold..but it feels different.  I have swelling here and that's never happened before...  So you end up down at your cancer center with your radiation oncologist smiling at you saying "Brandon, you're fine...but let's scope you anyway so you feel better."  True story, happened yesterday (I happen to work at the hospital where I was treated so I can just walk down there...they love that).

    Fatigue is a well documented side effect that can come whenever it wants to...they don't know too much about why but think it's linked to inflammation...which makes a lot of sense since our bodies are totally inflamed and healing...

    At any rate, it sounds like you're taking good care of him...sometimes that's the best medicine.  :-)

    Thanks, Johnsonb. I just

    Thanks, Johnsonb. I just wanted to make sure I wasn’t missing serious symptoms that needed a doctor. I’m just letting my husband lie on the sofa wrapped in a cozy blanket while he binge watches Netflix. He’s currently working his way through Breaking Bad again. Walter White’s cancer diagnosis has taken on a whole new level of interest for us this time around!

  • SuzJ
    SuzJ Member Posts: 427 Member
    Used to be..

    that I'd be wearing T shirts in winter as I was always warm, now? I am freezing all the time, many many many layers of clothers, fleece lined leggings under my jeans.. thermal shirts under the layers - and Im STILL cold.

     

    Of course that may be an effect of losing my thyroid (RIP) another radiation victim, but.. oh well!

  • christine2080
    christine2080 Member Posts: 71
    My husband bought a pair of

    My husband bought a pair of fleece lined pants that he is loving this winter!