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So many appointments

VivianLee5689
VivianLee5689 CSN Member Posts: 546
in Head and Neck Cancer #1
Today has been a busy day. We had a 9:20 with ENT, 10:20 with chemotherapy oncologist, 1:00 mapping/mask making; 2:30 barium swallow. My husband was exhausted when we got home. We were supposed to have the barium swallow on the 30th, but the voice/swallow therapist was very concerned with David's last swallow test and asked if we could move the barium swallow to today. The results of that test indicates he has a significant impairment in swallowing and his muscles are very weak. She said he aspirated every bit of thin liquid he ingested. She is starting him on some thick soups/puddings to try to get aggressive with increasing his swallow muscles. She was concerned if she couldn't get him swallowing before chemo/radiation started he may have a very difficult journey back to eating. He has another appointment with her in the morning to monitor him eating the desired foods and giving him pointers on what might be effective. We also found out chemo/radiation will start on October 30. He will be doing 33 radiation treatments and Cisplastin treatments given every 3 weeks starting at the beginning of his radiation. She gave us so many prescriptions it was quite overwhelming. We were initially told we would be getting the weekly chemo at lower doses, but after the oncology board met the decided he need the 100mg doses 3 times. He wasn't thrilled as they went over the potential side effects and drew blood for base line information. I feel like it is all coming together and although overwhelming it feels good to know we have a start date and we are ready to fight this fight and get on with our lives.
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Comments

  • Skiffin16
    Skiffin16 CSN Member Posts: 8,305 Member
    #2
    Kickin Butt
    It'ssssss KICKIN BUTT Time....

    Stay positive...check

    Atay hydrated....

    Kick cancer butt...check

    Sounds like a plan

    Best,
    John
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  • hwt
    hwt CSN Member Posts: 2,328 Member
    #3
    Familiar
    The whirlwind of activity sounds all too familiar. I started with the same plan as David has but after the 1st Cisplatin kicked my rear, they switched me to weekly which was much better for me personally. Just telling you that so you know they can switch it up midstream if they want or need to. I never did have any nausea. When I say it kicked my rear, I had to go for daily hydration for a week. Since hydration and nutrition are key, it's important to get those swallow muscles working well. Sounds like you're on top of that issue. You're gonna have lots to celebrate come the new year when all of this is behind you.
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  • luvofmylif
    luvofmylif CSN Member Posts: 344
    #4
    hwt said:

    Familiar
    The whirlwind of activity sounds all too familiar. I started with the same plan as David has but after the 1st Cisplatin kicked my rear, they switched me to weekly which was much better for me personally. Just telling you that so you know they can switch it up midstream if they want or need to. I never did have any nausea. When I say it kicked my rear, I had to go for daily hydration for a week. Since hydration and nutrition are key, it's important to get those swallow muscles working well. Sounds like you're on top of that issue. You're gonna have lots to celebrate come the new year when all of this is behind you.

    He is going to be getting
    He is going to be getting the same schedule of chemo that John is getting. He got first dose last Friday. You will figure it all out...First dose not that bad but not sure how second dose in 2 more weeks will be. Sounds like from most people on here it gets pretty tough by then.

    Sorry to hear about swallowing issues. It's gonna get better..hang in there.

    Joan

    Today was the fourth radiation. Eachday we mark them off on the calendar
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  • CivilMatt
    CivilMatt CSN Member Posts: 4,725 Member
    #5
    it will switch to routine soon
    Hi Vivian,

    Remember they said potential side effects not guaranteed. Take your meds, be proactive, stay hydrated, keep swallowing and show this crap who is boss.

    Best,

    Matt
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  • phrannie51
    phrannie51 CSN Member Posts: 4,716
    #6
    A plan is always so nice to finally get.....
    He's doing the same plan I had for the radiation and the Cisplatin...Concurrent, and 3 weeks apart.

    Yes, finally after all that time cooling your heels waiting around, it becomes a whirlwind of activity...I'm glad they're being very concious of his swallowing...that is so darn important.

    You guys WILL get thru this...one day at a time, one foot in front of the other...that's the only way to do this.

    p
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  • ToBeGolden
    ToBeGolden CSN Member Posts: 695
    #7
    The Long Road:
    Just want to say I'm still thinking of you and David. I know the road seems long, but soon you will be at the end of treatment. That will be a great day. Rick.
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  • Hard12Find
    Hard12Find CSN Member Posts: 223
    #8
    Viv & Dave
    Just know I started this journey a very little before you, and next Wednesday will be my 1/2 way point. I have had a rough ride, but it is going by quickly.....hanging in there and pulling for you both.......
    Jim
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  • ditto1
    ditto1 CSN Member Posts: 660
    #9
    Hard12Find said:

    Viv & Dave
    Just know I started this journey a very little before you, and next Wednesday will be my 1/2 way point. I have had a rough ride, but it is going by quickly.....hanging in there and pulling for you both.......
    Jim

    Just have to be Pete and RePete
    What the others have said, its great to get a plan and get the process started to get rid of the cancer. I know when I started it seemed like forever from when I was dx. I had 2 Cisplantin 3 weeks apart and 9 Erbitux in conjuction with 33 RADS. While going thru it seemed like forever and very redundant, like most things in life when it ended it seemed like it went by in a flash. So as the others have said and I agree keep the swallower going and follow the Docs suggestions and you will be fine, its tough but doable.
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  • hrowe
    hrowe CSN Member Posts: 57
    #10
    After treatment
    My ENT scopes my throat (nasal endoscopy) once a month for the first year and then every other month the second year. I see my med onc and rad onc every 4 months. Lymphedema Therapist every other week. Speech Language Therapist once a month. Pet scan and soft tissue with chest CT scans alternating at 4 month intervals. I Had a SCC IV tumor at the epiglottis. Now resolved.

    So, expect a busy schedule even after treatment. You'll get through the initial treatment just fine! They do beat you up for 7 wks or so but you will heal quickly!
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  • cureitall66
    cureitall66 CSN Member Posts: 913
    #11
    A Plan....
    I've been thinking about you both. Sent you an email last week, but figured you've been busy with appointments. Sounds like things are moving along.

    Hang in there. Email me when you get a chance.
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