Week 1 of husband's lingual tonsil cancer

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robillard219
robillard219 Member Posts: 3
in Head and Neck Cancer #1

My husband was diagnosed with Stage III lingual tonsil cancer (left side) with left lymph node involvement.  We are doing rad and chemo (Cisplatin).  He started both on August 24th (Wed.)  We were under the impression that things wouldn't get challenging until end of week 2 or 3 but Saturday early morning he woke with a severe headache on the left side of his head behind his ear with acute shooting pains up to the top of his head.  We ended up at the ER by Monday morning because we just couldn't get him any relief.  He also presented in Afib in the ER (never had that before) but nothing physical causing it most likely stress, pain or dehydration or some combo of all of them.  We are 7 days in...with 6 more weeks to go.  I am not a meek woman and I'm not easily scared or frightened by a challenge but I have to tell you folks I am scared.  I am trying to get him to eat but he has lost 10 lbs in 4 days because the headaches make him nauseous and not wanting to eat.  They told us the headaches are probably referred pain from the tumor and the radiation treatments because all tests came back negative for any physical reasons.  We are taking oxycodine for pain (pretty much whenever he needs it but it doesn't always work quickly...we are going to get involved with pain mgt dr next week to see if we can come up with the perfect concoction for his head pain)

The dr.s want us to hold off as long as possible for the feeding tube but i think we need to move forward with it.  Swallowing hasn't become hard yet but if the headaches persist PLUS the sore throat I'm really worried he won't be able to keep his weight up. I don't know what I'm asking any of you to do or say I'm just trying to get all this worry out of my head and into the world wide ether.  I am working hard to Embrace the Suck - to not fight the crap but embrace it, breathe through it and keep positive but dear lord cancer is hard.

 

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  • Kari2007
    Kari2007 Member Posts: 108
    #2
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    My heart

    Cancer is the hardest thing I've had to do and my heat goes out to you and your husband. Especially to be faced with agonizing symptoms so early in treatment. I hope the right combination of pain meds are found soon. Perhaps Fentanyl? What is he taking for nausea? There is a drug called Compazine that is used for migraine sufferers and is an anti nausea drug. I wonder if this could help.

    I got my tube before starting treatment and my docs were thrilled. Once I lost my sense of taste, I really struggled to keep calories in. I still don't like it and can't wait to get it out, but it's kept my weight pretty stable and it can take the anxiety out of eating. 

    Btw, I'm 2.5 weeks post treatment for back of throat HPV+ SCC that spread to two lymph nodes. Recovery is not easy, but please keep the faith that you will get your lives back. Perhaps slightly altered, but you will get it. Lean on the fine folks on this thread. They are a kind bunch who have seen it and done it.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    welcome

     

     

    robillard219,

    Welcome to the H&N forum, I am sorry you are here, but hopefully running into a room full of “been there done that” cancer people will help.

    Besides the pain management and adjusting to side effects, two of the most important things on your list are hydration and nourishment.  You take care of those two and many problems can be avoided.  It doesn’t matter if you have to sip water all day and whether you eat or drink the calories.   It is hard to do either with a headache, so I hope the pain management is successful.

    MOST side effects can be managed and hints abound with the H&N members.

    This will all work if your husband can get on top of this situation.  We all had  to find a way to cope and he can too.

    You need to do all you can, but remember yourself and seek help, comfort and “me time” as needed.

    This is not what either of you or any of us signed up for, but it is short term and will end.

    Good luck,

    Matt

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux)

    You also should check out the superthread.

  • Fritz
    Fritz Member Posts: 106
    edited September 2016 #4
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    So Sorry.

    I am sorry you are having to deal with these issues, especially so early in the treatment process. I was Stage IVA Tonsil Cancer with spread into tongue base, soft palate and nearby lymph node. Treatments consisted of surgery to remove tumors and modified neck dissection to remove 24 lymph nodes. This was followed by weekly Cisplatin and 33 radiations sessions. So I understand your treatment regimine.

    As Matt says above, try your best to have him stay hydrated as long as you can. A lot of the symptons you describe can be a sign of dehydration. If he cannot swallow enough water or fluids, the chemo infusion facility should offer you the ability to come in for fluids. With Cisplatin, hydration is crucial. This is such a toxic drug that he needs hydration to flush it from the kidneys and other organs to avoid possible long term side effects. If you have not already done so, stock up on commercial supplements for calories as well as ingredients for smoothies, milkshakes or any other fluids to help maintain calorie intake. If he cannot take solids, you can maintain calories with a liquid diet too. I was liquid only from week 3 on and only lost a total of 3 lbs by the time my treatments ended. I did not have a tube either.

    Also, stay ahead of the pain. Once it hits, it is hard to catch back up in its managment.

    Hope things improve for you.

    Freddie

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