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shae and todd
shae and todd Member Posts: 3
edited February 2012 in Head and Neck Cancer #1
Hello there. I am a caregiver to my wife Shae. She'll post sometimes, too sick to right now. She finished radiation therapy 3 months ago for ethmoid cancer. Everything was fine until last month when she totally has gone into decline. During the actual treatment she was great, ate wonderfully. her doc just told us Thursday about this site. he said we need this for support. She is now dealing with the following side effects: no appetite, not even to drink water, depression, low blood sodium,115.coughing and sometimes coughing up nasty stuff, no energy, sore mouth , trouble swallowing, dehydrated. She's also been aspirating into her lungs I think. .We have been married 15 years. We have 2 teenagers. My wife is only 42 years old. She had beautiful sandy brown hair that now has tons of gray. this has made her so very depressed. I had colon cancer 11 years ago, and I must say the treatment for head and neck seems so much worse than I endured for my stage 2 colon cancer. I feel so sad for my wife as I watch her get weaker. Her doctor has given an appetite enhancer and antidepressant. She wasn't able to get a feeding tube due to some lung issues she had before the cancer. her oncologist felt it would be harmful to sedate her because her lungs are really weak. As a caregiver I need advice and support. my family is breaking and I can't bear to see my wife suffering from these effects. the treatment seems to have worked, but we get a pet scan coming up.Thnak you all for letting me "talk". Please let me know whther anyone had the same side effects as Shae.

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    Hang in there.
    What you are describing is not all that much out of the norm here. I meet weekly with another head/neck cancer survivor. He's almost three months out from end of chemo and rads, and will have his first follow up PET CT soon. He's depressed, fatigued, lethargic, and losing weight. He has a feeding tube still in place, and is drinking upwards of ten to fifteen cans of Jevity a day while he tries to swallow soft foods and the weight keeps dropping. He has stated that he found the actual treatment process to be easier to deal with than the after-effects he's facing now.

    I'm almost 21 months out now, and still have a sore mouth and trouble swallowing, for a variety of reasons. I have no spit, no snot, and no tears, which leaves me pretty uncomfy. I believe I'll be coughing up nasty stuff for the rest of my life. But the operative word here is 'life.' I get to live it.

    Most folks here will chime in with some story or other about strange nodes, nodules and patches of stuff in their lungs. For the most part, these things seen in the lungs are unrelated to the cancer. I have two lung nodules that my doctor is watching pretty closely.

    One of my doctors said that the treatment for head/neck cancer is the most grueling treatment regime out there. It sure felt like it to me.

    Deb
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    D Lewis said:

    Hang in there.
    What you are describing is not all that much out of the norm here. I meet weekly with another head/neck cancer survivor. He's almost three months out from end of chemo and rads, and will have his first follow up PET CT soon. He's depressed, fatigued, lethargic, and losing weight. He has a feeding tube still in place, and is drinking upwards of ten to fifteen cans of Jevity a day while he tries to swallow soft foods and the weight keeps dropping. He has stated that he found the actual treatment process to be easier to deal with than the after-effects he's facing now.

    I'm almost 21 months out now, and still have a sore mouth and trouble swallowing, for a variety of reasons. I have no spit, no snot, and no tears, which leaves me pretty uncomfy. I believe I'll be coughing up nasty stuff for the rest of my life. But the operative word here is 'life.' I get to live it.

    Most folks here will chime in with some story or other about strange nodes, nodules and patches of stuff in their lungs. For the most part, these things seen in the lungs are unrelated to the cancer. I have two lung nodules that my doctor is watching pretty closely.

    One of my doctors said that the treatment for head/neck cancer is the most grueling treatment regime out there. It sure felt like it to me.

    Deb

    H&N
    Did your wife also get chemo? Did the lung issue prevent chemo?

    Others have spoke of their post-tx being worse than when they were getting treatment, but my experience is the opposite. Still, the first couple months for me was no walk in the park. If depression is a very real issue- your Onco/Rad office, or even regular PCP, should know who she can see who will be able to help along that line. Many have needed help in dealing with the enormity of it all.

    The numerous side-effects of H&N can be more than many of us can take in stride, and the medical community is aware of this. The importance of Nutrition is something you must realize- it is what helps the body to heal itself, as best it can. Be it Ensure, or one of the recipes in the Superthread- advise you to stress it to her that she needs the water and Ensure/Boost to help her body heal.

    Hope and Pray the PS/CT is a good one, and hope you'll keep us informed on what's what, along with any questions or concerns.

    kcass
  • shae and todd
    shae and todd Member Posts: 3
    #4
    Kent Cass said:

    H&N
    Did your wife also get chemo? Did the lung issue prevent chemo?

    Others have spoke of their post-tx being worse than when they were getting treatment, but my experience is the opposite. Still, the first couple months for me was no walk in the park. If depression is a very real issue- your Onco/Rad office, or even regular PCP, should know who she can see who will be able to help along that line. Many have needed help in dealing with the enormity of it all.

    The numerous side-effects of H&N can be more than many of us can take in stride, and the medical community is aware of this. The importance of Nutrition is something you must realize- it is what helps the body to heal itself, as best it can. Be it Ensure, or one of the recipes in the Superthread- advise you to stress it to her that she needs the water and Ensure/Boost to help her body heal.

    Hope and Pray the PS/CT is a good one, and hope you'll keep us informed on what's what, along with any questions or concerns.

    kcass

    it's great to know we're not
    it's great to know we're not alone in saying the after treatment can be worse than actual treatment itself. Shae didn't have chemo. She had surgery and radiation. I don't know what we would have done if she'd had chemo. My mother in law is coming up next week to help out some. She can't stay long though because my father inlaw has alzheimers. Shae says it hurts and is so hard to swallow that she just can't make herself do it. Everything tastes horrible. She is however reading the posts on here. I have to say, referring us to this site was one of the best things her ENT did. It is already helping me tremendously. I was in the army for 10 years and have been a security guard for the last 14 years. This experience has been harder than both of those and my bout with cancer.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #5
    shae and todd said:

    it's great to know we're not
    it's great to know we're not alone in saying the after treatment can be worse than actual treatment itself. Shae didn't have chemo. She had surgery and radiation. I don't know what we would have done if she'd had chemo. My mother in law is coming up next week to help out some. She can't stay long though because my father inlaw has alzheimers. Shae says it hurts and is so hard to swallow that she just can't make herself do it. Everything tastes horrible. She is however reading the posts on here. I have to say, referring us to this site was one of the best things her ENT did. It is already helping me tremendously. I was in the army for 10 years and have been a security guard for the last 14 years. This experience has been harder than both of those and my bout with cancer.

    Surgery
    Unfortunately, Shae appears to be another example of why many of us should get PEGs- if she had Surgery for removal of C mass, then they could have also installed a PEG, which is a very minor Op. I got mine before treatment started, as well as a Port. A PEG would NOT impact lung function, and is as simple as a short tube running from your abdomen to the inside of the stomach. Perhaps she can't get one now, according to your Dr, but likely could have before treatment started, as I, and a number of others, did. Unfortunately, perhaps your Dr errored in this regard, as the PEG makes swallowing function irrelevant, and taste is also not an issue. There are numerous types, and you might want to make inquiries into the possible of getting one which is more patient-friendly in installation. Would a "Spinal" anesthesia be possible? Had two hernia Ops years ago with Spinals, and didn't feel a thing.

    Todd- if she can't swallow, and is not getting Nutrition- MAJOR PROBLEM which must be dealt with ASAP. She HAS to get Nutrition to heal, along with water. This is a standard for all of us, and I urge you to confront your Dr with this matter ASAP. The absence of water and Nutrition will likely result in complications that will find her in the hospital, and your Dr must know that is fact.

    kcass
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    Kent Cass said:

    Surgery
    Unfortunately, Shae appears to be another example of why many of us should get PEGs- if she had Surgery for removal of C mass, then they could have also installed a PEG, which is a very minor Op. I got mine before treatment started, as well as a Port. A PEG would NOT impact lung function, and is as simple as a short tube running from your abdomen to the inside of the stomach. Perhaps she can't get one now, according to your Dr, but likely could have before treatment started, as I, and a number of others, did. Unfortunately, perhaps your Dr errored in this regard, as the PEG makes swallowing function irrelevant, and taste is also not an issue. There are numerous types, and you might want to make inquiries into the possible of getting one which is more patient-friendly in installation. Would a "Spinal" anesthesia be possible? Had two hernia Ops years ago with Spinals, and didn't feel a thing.

    Todd- if she can't swallow, and is not getting Nutrition- MAJOR PROBLEM which must be dealt with ASAP. She HAS to get Nutrition to heal, along with water. This is a standard for all of us, and I urge you to confront your Dr with this matter ASAP. The absence of water and Nutrition will likely result in complications that will find her in the hospital, and your Dr must know that is fact.

    kcass

    +1
    This is not a no-win situation, no matter how it seems. I totally agree wiht Mr Cass. there need to be priorities set, and things need to get done. To that end, what jumps off the page to me that can be remediated soon are the issues of nutrition and depression. It is fine, for instance to be on a medicine for depression, but that often doesn't solve the problem. It may take:

    1) multiple medicactions
    2) a trained mental healthprofessional
    3) support groups
    4) other approved treatments for depression

    The tube thing needs solved. It's a RELATIVE problem that she has contraindications to insertion. It is not an absolute problem. You didn't say how much weight she's lost, but geez, eventually, you cant go on not eating.

    It occurs that the rest of her problems solve themselves with time, but these are the ones that are really standing in the road. Also sounds like its time to push the agenda and get this stuff behind her.

    Because there is life after treatment of this sucker.


    Best,

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Welcome Todd...
    So sorry to hear of the situation you find your family in....

    First I offer my thoughts and prayers, believe and have faith that miracles do happen and today’s technology and medicines are a great thing.

    Here is a link to the SuperThread, with tons of awesome information as well;

    SUPERTHREAD

    I had STGIII SCC Tonsil Cancer, as you mentioned H&N Cancer Treatment is pretty brutal. But on the positive side, many here have endured and doing very well.

    I also didn't have a feeding tube, but mine was just because it wasn't prescribed.

    For me all of the issues your wife is having I didn't have...other than throat pain. But that was controlled with meds and not anything that most haven't also dealt with from the rads.

    There are several wonderful people here, hopefully someone will be able to provide you with more insight to your specific questions.

    Just know, you and your family are not alone here.

    Best,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Total Agreement...
    She has to have calorie intake and hydration...it out weighs anything at this point. Without it, she can't survive, and definitley can't heal...a spiraling situation.

    Communicate with your MD's or another set if you can't get resolve....and ASAP.

    Both Kent and Pat (and other's) realize the urgency and need to remedy this quickly.

    Best,
    John
  • shae and todd
    shae and todd Member Posts: 3
    #9
    Skiffin16 said:

    Total Agreement...
    She has to have calorie intake and hydration...it out weighs anything at this point. Without it, she can't survive, and definitley can't heal...a spiraling situation.

    Communicate with your MD's or another set if you can't get resolve....and ASAP.

    Both Kent and Pat (and other's) realize the urgency and need to remedy this quickly.

    Best,
    John

    i agree with that 100
    i agree with that 100 percent. Her doctors feel that it isn't safe to sedate her, needs general anathsia for PEG. They say it may weaken her lungs that she'll be placed on ventilator. I just don't know. They just keep telling her to eat. And she keeps saying she can't do it with all the mucus and soreness. She's been suctioning the mucus and just started rinsing out her nose. hardheaded. We live in a small town in Ga. called Sylvania and We go to Savannah for treatments and follow-up.I've missed a ton of days at work and last night I just got frustrated with her for not eating. It seems like she could force herself knowing that she has to do this to live. i really don't understand. We do have an appt. on Wed. with the doctor to discuss this. I think she needs the PEG.
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #10
    shae and todd said:

    i agree with that 100
    i agree with that 100 percent. Her doctors feel that it isn't safe to sedate her, needs general anathsia for PEG. They say it may weaken her lungs that she'll be placed on ventilator. I just don't know. They just keep telling her to eat. And she keeps saying she can't do it with all the mucus and soreness. She's been suctioning the mucus and just started rinsing out her nose. hardheaded. We live in a small town in Ga. called Sylvania and We go to Savannah for treatments and follow-up.I've missed a ton of days at work and last night I just got frustrated with her for not eating. It seems like she could force herself knowing that she has to do this to live. i really don't understand. We do have an appt. on Wed. with the doctor to discuss this. I think she needs the PEG.

    peg tube
    I have to agree with most people here. She desperately needs the tube. If I were in your place, I would ask for a second opinion about the placement of a feeding tube. The procedure is not lengthy at all. Maybe fifteen minutes from start to finish so she wouldn't be under anesthesia for long. Don't blame her for not eating! I can remember back in 2004 not wanting to eat anything too. I didn't have a tube put in until after I became so run down, I could barely walk. We had to stop treatment temporarily and have the tube put in. I don't think I would have survived without it. Right now I am hooked up to "lunch" because I had to have another one put back in for different reasons. May God bless you and your family. Take care.

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