First Week of Treatment Down

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OKCnative
OKCnative Member Posts: 326 Member
edited August 2017 in Head and Neck Cancer #1

Well, I started my treatment last week for SCC base of the tongue (stage 3, approx .5" square tumor, HPV+ with multiple nodes on both sides of neck, 47yrs old, no drinking, no smoking).

Doing the 3 mega doses of chemo (Cisplatin) with daily radiation to equal 35.

Day one of chemo was nightmare. I had met several people who said their first few days after chemo were just fine and it 'hit them' around day 3-5. For me it was 30 minutes after the treatment ended. I felt fine until I got into the car. Then it was like massive motion sickness. Wife got me home and I slept the entire day just to not have to deal with the nausea. Never threw up, but just felt like i would. 

Day two was slightly better but I still was in bed most of the day feeling very nauseous. I did wake up feeling better and drove myself to radiation. But, I ended up napping in my car before I felt well enough to drive home.

I felt pretty decent on day 3. Had a ride to radiation and back. I was able to go to work and actually interact and get some things done. Less nausea and more 'drugged up feeling.'

Day four was pretty good. Went in for IV fluids, left and went to work, had lunch with co-workers (taste buds are definitely going - things taste muddy and muted today), attended some meetings and went home and mowed the acreage.

Day five (this morning, Sat) I'm waking up early feeling pretty decent.

Symptoms today seem to be a slight bleeding of the gums (I brush, floss, Water Pik, flouride tray and gargle a couple of times a day). Constipation is setting in. I'm definitely loosing my appetite. Fortunately not due to nausea right now - just lack of taste. I also have a pretty constant mild to middle range headache. Sleeping at night is bothersome. Can't get comfortable and wake up constantly.

Weight is good. Wife and dietician had me put on 20 pounds just prior to treatmeant and I'm holding steady (feel like a slug).

One week down! I hear it gets much worse, so I'm hoping to address issues as they come up.




Comments

  • caregiver wife
    caregiver wife Member Posts: 234
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    First Week Down

    HUGE step forward.  You will get through this.  Cancer is a beast.  Cisplatin is the sledge hammer, not a fly swatter.  Everyone's journey is different.  You are doing a great job.

    Hugs,

    Crystal

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    that wasn''t so bad???

    OKC,

    And you are still working, I commend you.

    Stay hydrated and nourished, take the nausea meds early, keep drinking water and swallowing, take it as it comes and prepare for more.

    It does tend to get worse, but it also tends to get better. Keep looking forward.

    Good Luck.

    Matt

  • soonermom
    soonermom Member Posts: 155
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    Weight

    Wow, I am beyond impressed you managed to put on weight before treatment.  We tried to indulge my husband but he never put on any weight from the day of diagnosis until today.  Every week I just pray he can maintain his weight.  As he says, he just has no capacity for food anymore.  It's like feeding a bird.  Slow progress but steady.  We ate out tonight and he discovered he can eat salad again but of course that is not calorie dense.  Still, every little step is progress toward a return to an overall more before treatment like diet.  Every patient has a different path.  My husband had never, ever been a napper but suddelny found he could sleep a lot during the day and still be tired.  He worked mostly full-time for the first three weeks.  It was a huge help to him mentally and emotionally to work as long as he could but then he just had to cut back and eventually stop. Stay strong.  

  • OKCnative
    OKCnative Member Posts: 326 Member
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    Question: I'm someone who

    Question: I'm someone who hates the feeling of being on any kind of drug/alcohol, etc. - always makes me feel too loopy (even over the counter). The every 6 hour nausea pills they gave me, I stopped taking on my third day after treatment. I've had no nausea and the loopiness is gone. Should I only take as needed or is there a reason I should take them daily (just in case) regardless of symptoms?

    Question: I did notice yesterday that my vision is noticebly blurry. Makes it hard to look at the computer. Is this common and temporary?

    Oh, and Saturday - Day 5 - went great. Finished up the yard, tended to the bees, went out to lunch and even went to the mall to watch a movie (and didn't fall asleep!). We did take it easy in the early evening though and sat watching TV from about 7pm on.

  • soonermom
    soonermom Member Posts: 155
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    MEDs

    We only used the nausea meds as needed.  If needed, he took them as directed every six hours for example.  If he was blessed by not feeling sick, he skipped those meds.  He did carry them with him everywhere though just in case.  There are different meds for nausea too.  If you need a med to control symptoms and it is creating other unpleasant side effects, you can ask to try something different.  Some of the pain meds did effect him differently.  Some made him much loopier than others.  We just experimented until we found the one that would work that resulted in less loopiness.  You may well not have needed pain meds yet.  He was loopier from those than the nausea meds, though both made him feel not as with it as usual.  Also, the chemo itself creates "chemo brain" over time and part of his mental difference was from that as well. Over time he was experiencing so many different changes in his body, it was sometimes hard to sort out what was causing what problem.  My husband did experience numerous changes with his vision from blurriness which he noticed especially when trying to use the computer to improved vision and not needing his glasses at all.  It was beyond strange.  The eye doc told us the only explanation was that it was related to vastly different levels of hydration during treament.  My husband did have difficulty with severe dehyration and of course took IV fluids at different points in treatment. A couple of the meds also had blurry vision as a side effect.  At 15 weeks post treatment he is back to vision close to pre-treatment and was actually was able to order new glasses confident his vision was stable and back to normal.  Your body is going through a lot of changes even this early in treatment.  In time this will all be over and you will be back to a new normal.  At some points my husband was frustrated by different side effects of the meds and he tried really, really, really hard not to take them but then he would just be overcome by the severity of the pain, nausea or other issues and realize he could not rest or function at all without them.  The first time he needed pain meds, it turned out he had developed thrush.  Not everyone develops thrush during treatment but it was a struggle for him off and once it started.  His "chemo brian" did not really kick in until after the second dose but everyone is different, some people never have it and some experience it sooner.  The good news is that by a month after treatment he was off all drugs and back to work full-time.  Hang in there, all these drugs are not forever.  

  • Andy13460
    Andy13460 Member Posts: 115
    edited August 2017 #7
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    First week down

    Well done the anti sickness medication can cause constipation I was on steroids for 3 days after each chemo I remember the 3 big doses of Cisplatin are sort of cumulative each time is a little worse than the last. Nausia shouldnt go past 3 days. Get out walking every day you can 

  • ClaCla
    ClaCla Member Posts: 136 Member
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    Will be starting chemo soon

    Thanks for sharing, OKC Native and everyone else.  Just diagnosed with Stage 3 Squamous Cell NSCLC.  Just had left lower lobectomy via VATS six days ago.  Seeing oncologist on Aug. 30, who is expected to recommend chemo and radiation.  How long does it usually take to start chemo after seeing the oncologist? I was told doctors are better able to manage the symptoms of treatment these days; do most people still experience significant hair loss?  I am trying to figure out how much of my RV camping plans in September I am going to be able to keep.  I know getting treatment is the biggest priority right now, but of course being able to live life as fully as possible is right behind it in priorities.  Thanks again for sharing.  Best success and God bless.

  • Klingels
    Klingels Member Posts: 78
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    ClaCla said:

    Will be starting chemo soon

    Thanks for sharing, OKC Native and everyone else.  Just diagnosed with Stage 3 Squamous Cell NSCLC.  Just had left lower lobectomy via VATS six days ago.  Seeing oncologist on Aug. 30, who is expected to recommend chemo and radiation.  How long does it usually take to start chemo after seeing the oncologist? I was told doctors are better able to manage the symptoms of treatment these days; do most people still experience significant hair loss?  I am trying to figure out how much of my RV camping plans in September I am going to be able to keep.  I know getting treatment is the biggest priority right now, but of course being able to live life as fully as possible is right behind it in priorities.  Thanks again for sharing.  Best success and God bless.

    Will depend on Oncologist's and your schedule

    Treatment hit hard and fast for my husband. He was barely able to work during second week of treatment. We had to cancel our cruise.

  • soonermom
    soonermom Member Posts: 155
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    Klingels said:

    Will depend on Oncologist's and your schedule

    Treatment hit hard and fast for my husband. He was barely able to work during second week of treatment. We had to cancel our cruise.

    RV

    It is hard to say until you know what your treatment plan might be.  The type of chemo you have and your radiaiton schedule will determine much of how you respond.  I can only tell you that the treatment my husband had was brutal even with agressive attempts to control side effects.  The treatment hit at an extremely inconvenient time for him at work.  He was very determined to keep working as much as possible.  Despite his best efforts though he had to cut back to part time and then soon after the second round of chemo he was pretty much off work until a month treatment ended.  Part of that was because he lost his voice midway through treatment.  As far as when treatment might start that is often a function of the center where you have your treatment and what they require before you start.  My husband started two weeks after his first visit to the cancer center but we already had completed many of the necessary steps at our home medical center.  One of the hard things for us was learning not to count on his being able to do anything but if he was able to do something, to be ready and grateful.  He had his second chemo on day 22 of treatment.  By day 25 he was pretty much in the "don't count on being able to do anything" phase.  However, as I said you may have a different treatment protocol or respond differently.  Hoping you have a smooth ride through this part of your treatment.  

  • ClaCla
    ClaCla Member Posts: 136 Member
    edited August 2017 #11
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    Klingels and Soonermom

    Klingels and Soonermom, thank you for the info.  That's what I needed to know.  So my fingers are crossed that it will be okay to delay the start of treatment until after the RV trip(s).

    I suspect once people start treatment they're too sick to keep posting their experience of it.  And their caregivers are undoubtedly have their hands overly full.  But if anyone comes across an ongoing discussion of what to expect, please let me know.

    Thanks much again.  Best success and hugs to you all.

  • Darylscc
    Darylscc Member Posts: 2
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    Nausea

    The nausea meds did not work for me, Doc put me on the 3 day regiment of steriods after chemo, that worked wonders and stopped the nausea. In the early stages it also give you energey.  Like you, I had gained about 10 pounds prior to treatment and on week 2 of chemo I was on the tractor cutting acreage.   Not any more, the weight loss is catching me, regardeless of how much I eat. I am sendentary all day because I am afraid that activity will burn calories and cause weight loss.  Had my last chemo today, got 7 more rads to go and I'm just trying to slow the weight loss for now.  For me the mouth sores is what made me get onto the pain meds and they seem to be coming and going with a new round of razor like sores showing up on my tongue. So like you, I HATE pain meds but this evening may very well be the evening that I get back on them for a while until I get the edge off of these sores.