plan moving forward

Steve5
Steve5 Member Posts: 147
in Head and Neck Cancer #1

As many of you have coached me, my plan is moving forward - had a salivary gland moved on Halloween and the port put in, saw the dentist yesterday - have to get root canal on one upper only - was due for this anyway - and had fluorine molds made - any of you doing fluorine on a daily basis for the rest of your life?  Also saw the oncoologist yesterday - will get 40 mg per meter sq of the cisplatin over the 7 week period with the radiation treatments - so - this Friday I go for the IMRT simulation and will also schedule a "training" session for the chemotherapy session - on that day will be at the treatment center for 1/2 day.  Dentist geve me Biotene toothpaste and mouthwash - recommended begin using to get use to  - can also use Tom's of Maine toothpaste -was a long day but probably not as long as some coming up - feel like I am giving a lot of blood samples and the oncologist took urine sample as well to see if kidneys could take the chemo -

Thanks to all of you along this road that is starting out - it was good for lack of a better word to have read about alot of this information from all of you on this network - I feel like I am getting some type of preparation - next hard part for me is actually telling my sister and dad - that will be difficult - my mom passed from ovarian cancer, found stage IV 5 years ago - she was 74 and had a lot more to go - okay enough said - again thanks for all your support and for letting me write whatever it is I write here - it is so very helpful to come here and read all of the topics and your input - it really gives me strength.  Should mention for sure I have a super caretaker in my wife, who is the best, as well as my kids.

Have a great day everyone

 

Steve

Ps. bought an eletric razor as many of you have suggested - and wearing a turtleneck to work today to hide scar from gland movement -

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    steve, now that u have a plan

    steve, now that u have a plan things will move quickly.  u'll b at the halfway mark b4 u know it.  doog luck telling ur dad and sister.  i'm sure they will want 2 help once they get over the initial shock.  i'm sorry about ur mom.  thank God ur cancer is treatable!

    God bless.

    dj

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Sounds Good...

    A plan in the works....

    I used flouride daily for quite awhile during and after treatment..., now at nearly five years out, I use it about once a week.

    The biotine is OK, not a big fan, but it does help some with the dry mouth, and doesn't have alcohol which dries you out more in some mouthwash. Biotene does make a small spray bottle, that I kept in the truck for a little moisture at times...you might look into Stoppers4. My dentist gave me ORAL-B STOP for flouride gel.

    You'll get used to the bottle of water at your side 24/7 for a while...

    Just make sure that you involve your relatives, educate them..., this cancer is very treatable usually....

    Your first real day might be longer as they have to see how fast they can infuse the chemo, take blood samples before you start and results, etc...

    Here are a few tips....

    If you have the opportunity, sit close to the restrooms, you'll be going once they start pumping the goods into you...

    Also, take a lunch, once mid-day when the pros that have been going for awhile start cracking their lunch out, you'll be starving...

    Relax, learn, stay positive and you'll do fine...

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Having a plan

    in the works made me feel better....and once I was an active member of the fight the emotional part of me started really feeling better!

    Like John said, once you get into the chemo room, if you can't be close to the bathroom, be sure to scout it out....I never had to pee so bad in my life, and there is a a lot of competition since everybody there has to pee, too.   Ditto again on the lunch....when others started heating up soup, and loved ones brought hot food from outside, I realized I'd really messed up coming empty handed.

    Sending you positive thoughts on telling your family....they will rally around you, tho.....nothing like family to tuck you into their hearts and arms.....

    p

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #5
    Flouride treatments

    Steve,

    I'll touch on the Flouride treatments as John spoke of the Chemo,etc. I am currently 9 years out from surgery and have been continuing my Flouride Treatments daily, as you mentioned for the rest of my (our) life.

    I originally purchased the Flouride trays and was instructed to bring them along when I received my Radiation Treatments, I did not have Chemo, so I followed orders. I was told that the trays helped with the radiation beams and my current fillings, not to sure if it really helped, but so far, so good.

    I am also doing a small experiment of Flouride trays verses Flouride toothpaste/gel over a 10 year period of time. I used the Flouride Trays that I had for 5 years, cleaned them as instructed and they eventually hardened up and were not flexable any longer. I at that time switched to another Dentist and he switched me to the Flouride toothpaste. What was different was that I don't use the trays any more, but still let the Flouride rest on my teeth for 30 minutes once a day. I tend to over do things, so some days I let the flouride rest on my teeth for over 30 minutes and it might be 60 minutes before I rinse my mouth out.

    All this information to say this, that I haven't had any cavities since my surgery. I had, due to my own fault, 2 teeth crack on me one day when I tried to eat some hard candy.  I had two caps put on and I am more careful on what I eat when it comes to the teeth. I do eat sweets and have been making up for the loss of not tasting chocolate for the first few years after radiation. My taste buds woke up and I have been making up for that now. I just make sure I brush after eating anything that has sugar in it.

    My Best to You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #6
    time to start

    Steve,

     It sounds like   a good (doable) plan, I wish you the least amount of side effects.

    Fluoride yes, as often as I remember to do it.  Had 6 month check-up yesterday and got the “alls good” and a bottle of fluoride gel to use with my whitening trays.  It is amazing how certain foods will coat and stick to your teeth when you are saliva challenged.

    As said, park yourself close to the bathroom, take your anti-nausea meds BEFORE you get sick, drink lots of water, when you hurt, take your pain meds and when you start rads have a nice music cd.

    It is interesting when family and friends find out about your cancer, interesting.

    Be sure to check the Superthread for “must haves”, you want to be over prepared.  There is nothing worse than suffering through a week-end.  Help your body adapt to the side effects in any way possible.  This isn’t a tough guy challenge; it is more about navigating through a bad storm.

    Come January, I will be looking forward to hearing how well you are doing, but first.

    Matt

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