What's normal??

debbieg5
debbieg5 Member Posts: 167
edited March 2014 in Head and Neck Cancer #1
I hesitate to post this because most people on here are reporting such positive things and I don't want to be a downer. But I am so concerned about my husband and just can't believe that the way he looks/acts right now is normal for chemo treatment side effects.

Just a brief background....diagnosed Sept 2007 with base of tongue cancer and lymph node on one side. Went through 40 rads and several Erbitux chemo treatments. Finished all the treatments by Dec 2007. Follow up PETs in 2008, 2009 and Jan 2010 were clean. In april 2010 he started having a sore throat that wouldn't go away. they discovered that the cancer had returned and was farther down the throat just on either side of the voice box. Since he already had regular radiation before it couldn't be repeated. Instead, he had 5 sessions of Cyberknife radiation and 3 chemos for the larger tumor. The smaller was expected to be taken care of by laser surgery. But about 6 weeks after the rads, they discovered that it had not taken care of the cancer so a total neck disection/laryngectomy was done on Sept 16. this was supposed to taken care of everything; all margins were clean. Again, his improvement wasn't as well as expected so another MRI was done and something was showing deep on base of tongue. Biopsy proved positive and PET scan showed a spot in upper, right lung. Since the only surgery for the tongue would have required removal of his entire tongue (feeding tube forever and no speech) and since it had already spread to the lungs, they said the best shot was chemo treatments to try to hold it at bay. They were not expecting a "cure".

He had first chemo on Dec. 15 and second one on Dec. 22. He has seemed to go continually down hill since then. this was his week off and there is no improvement. He has not even come downstairs the last few days but has asked me to bring his feeding apparatus upstairs so he can do it in bed. He has so much mucous coming out of his stoma and I don't think he has the strength any more to get it out effectively. On top of that, he tested positive last week for C-Diff infection. He has had diarrhea for weeks and is down to 117 pounds which may be contributing to his lack of energy also. I am just so scared because when I look in his eyes, it is like a blank, lifeless stare. Since this is supposed to be his "rebound/rest" week, I can't imagine that he could withstand another chemo. I understand from the doctors and other reading that chemo makes you very fatigued but this seems way past that.

I know everyone reacts differently, but does this seem like it's more than just chemo fatigue?

thanks and Happy New Year to all.
Debbie

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    call the doctor
    Debbie, have you contacted his physician about this? It may be he needs to go into the hospital to get on top of things - dehydration can be a big factor. Tell them you want to bring him in to be checked or meet them at the ER, if they or you prefer.

    If you haven't called the doctor, please do and let them know everything you have told us here on this site.

    Prayers being lifted, Debbie.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Noellesmom said:

    call the doctor
    Debbie, have you contacted his physician about this? It may be he needs to go into the hospital to get on top of things - dehydration can be a big factor. Tell them you want to bring him in to be checked or meet them at the ER, if they or you prefer.

    If you haven't called the doctor, please do and let them know everything you have told us here on this site.

    Prayers being lifted, Debbie.

    Hi Debbie
    It doesn’t sound good at all, I agree with mom on calling his doctor right away if you have not already done so. May be also look for a second opinion on his care, it is not good to be on chemo and have any infection in the body. Be very careful because his immune system is very weak at this point.
  • Pam M
    Pam M Member Posts: 2,196
    #4
    See A Doc, Please
    Debbie,
    Please don't feel like you're being a "downer". This website's main goal is to support cancer survivors and their caregivers. A lot of us would have been a lot worse off throughout our treatments if we never posted things that weren't bright and shiny. 9

    Your status can improve almost as quickly as it can tank. I would definately get him to the hospital to see about hydration needs - with weakness, infection and diarrhea, he's probably at the very least dehydrated - probably malnourished (no fault of your or his - sometimes it just happens). I had some days that I felt very weak, but at no time did I do my tube feedings from bed. That said, I do know that it is not uncommon for some folks to need to be fed while in bed. Still, I would rather see a doctor - any doctor if I couldn't get in to the oncologist. Can he take anything by mouth at this point? docs can also help with the mucous. I wish you both well.
  • debbieg5
    debbieg5 Member Posts: 167
    #5
    Pam M said:

    See A Doc, Please
    Debbie,
    Please don't feel like you're being a "downer". This website's main goal is to support cancer survivors and their caregivers. A lot of us would have been a lot worse off throughout our treatments if we never posted things that weren't bright and shiny. 9

    Your status can improve almost as quickly as it can tank. I would definately get him to the hospital to see about hydration needs - with weakness, infection and diarrhea, he's probably at the very least dehydrated - probably malnourished (no fault of your or his - sometimes it just happens). I had some days that I felt very weak, but at no time did I do my tube feedings from bed. That said, I do know that it is not uncommon for some folks to need to be fed while in bed. Still, I would rather see a doctor - any doctor if I couldn't get in to the oncologist. Can he take anything by mouth at this point? docs can also help with the mucous. I wish you both well.

    thanks for support
    thanks to every one for their suggestions and comments. I didn't think this seemed like "run of the mill" fatigue.

    I did call his oncologist's nurse on Thursday. I knew they would be having tumor board that morning and the ENT would be there also. I told her that I wanted to find out if they intended to do the chemo next week considering he had been fighting the infecion (the ENT had said when he ordered the test that he didn't think they would do chemo if it came back positive). I also told her that I thought they needed to know his general condition and not just make a decision based on blood work results prior to chemo.
    Unfortunately, Friday was a holiday for most of the offices so I did not hear anything back from them.

    pam...he is on total tube feedings. He developed a fistula (hole) just inside his stoma so if he tries to drink, he springs a leak. I have been staying on his case to put more water through his tube to keep from getting dehydrated.

    I'll keep you updated.

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