3rd attempt at getting my mask made

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Matt29
Matt29 Member Posts: 62
hi everybody well tomorrow will hopefully be the day to get the mask made 1:40pm and get this thing going if they can make the mask tomorrow then the following Monday i should be starting the chemo treatment 3 cycles of cysplastin and 7 weeks of rads i want to get it started so i can get it over with i'm hoping for no feeding tube but we will see i have been eating all the soft food i can handle including shakes and everything at MD Anderson they don't recommend a feeding tube right off and i guess they are big enough they can put one in rather quickly.Wednesday i will be having a huge party at my house to kick off my treatment starting and yes i will be making ribs so tender they just fall of the bone some loaded mash potatoes and some other stuff i know i don't have teeth which sucks but i have not let that stopeed me from eating what i like i will keep you all posted on the mask fitting i think i'm going to take an antivan before i even go in tomorrow make things a little easier that and some pain killers for my bottom teeth they hurt still all in all i'm ready to get this fight started.Any body ever hear of honey 1 teaspoon to swallow before treatment to help coat the throat then again after a family friend did this before they started treatment and it helped just curious.Thank You,Matt

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  • Irishgypsie
    Irishgypsie Member Posts: 333
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    Good Luck!!!
    Good Luck Tomorrow Bro!! Praying that you can get going so you can put this behind you!!

    God Bless!

    Charles
  • patricke
    patricke Member Posts: 570
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    Well Matt, as they say,
    Well Matt, as they say, let's get this party started. I hope that the fitting goes well, and you can finally be mask on, so you can finally get the treatment on. Never heard about the honey protection, but you never know; I recommend running that idea by the Rad Zap pros/doc to find out their take on the idea. I'm sure that they will shoot from the hip, and won't, wait for it............ honeycoat their answer. Best Wishes for tomorrow, and happy partying today!

    PATRICK
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    One step at a time
    Hi Matt,

    Here you go, good luck! The only words of advice I can give is what worked for me. Take something for anxiety, don’t open your eyes and ask the technicians to keep talking to you, it worked for me.

    Best of luck, best wishes and I’ll pray for a perfect fit, relax and go get’em.

    Matt
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I'm SO hoping tomorrow will be your day!!
    .....get this show on the road (I know how hard the waiting is!) I got hungry reading about the planned menu....yummy!! Get those goodies while you still can :). You are starting the same treatment I have been doing....35 rads, and concurrent Cisplatin chemo every three weeks.

    I agree you need to talk to your rad doc about using honey before your rads...you don't want to cause a problem that otherwise wouldn't exist. However, using honey right when you get home from rads might be a great idea. Laralyn was using Manuka honey to stave off mouth sores when she first started rads....it's a high powered honey from New Zealand and can be found at a health food store. I've been using Manuka cream for the bad spots on my neck...there really is something to the power of this honey.

    Talk to your oncologist about MuGuard, too...to start it early in radiation. It has worked very well for me, and I think it was helping Laralyn until she went into the hospital and wasn't using it. I haven't had ANY mouth sores since I started using it. Oh...and if the Dr. gets you prescription for it, the lab that makes it will be calling you before they send it...when they tell you how much it is for a months worth ($358), BE SURE to gasp twice...I only gasped once, and the cost of mine instantly went down to $100....somebody else on here gasped twice and got it for $50 bucks a month :). In other words, the price of it is negotiatable!

    Wishing you the best for tomorrow....do take an Ativan, it does make things easier. I have to take one everyday for the amifostine, so by the time I go to rads I'm half stoned.

    p
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    I'm SO hoping tomorrow will be your day!!
    .....get this show on the road (I know how hard the waiting is!) I got hungry reading about the planned menu....yummy!! Get those goodies while you still can :). You are starting the same treatment I have been doing....35 rads, and concurrent Cisplatin chemo every three weeks.

    I agree you need to talk to your rad doc about using honey before your rads...you don't want to cause a problem that otherwise wouldn't exist. However, using honey right when you get home from rads might be a great idea. Laralyn was using Manuka honey to stave off mouth sores when she first started rads....it's a high powered honey from New Zealand and can be found at a health food store. I've been using Manuka cream for the bad spots on my neck...there really is something to the power of this honey.

    Talk to your oncologist about MuGuard, too...to start it early in radiation. It has worked very well for me, and I think it was helping Laralyn until she went into the hospital and wasn't using it. I haven't had ANY mouth sores since I started using it. Oh...and if the Dr. gets you prescription for it, the lab that makes it will be calling you before they send it...when they tell you how much it is for a months worth ($358), BE SURE to gasp twice...I only gasped once, and the cost of mine instantly went down to $100....somebody else on here gasped twice and got it for $50 bucks a month :). In other words, the price of it is negotiatable!

    Wishing you the best for tomorrow....do take an Ativan, it does make things easier. I have to take one everyday for the amifostine, so by the time I go to rads I'm half stoned.

    p

    well Matt..now you made me hungry...
    ...jeez...now I gotta go get some mashed potatoes and some BBQ...that sounds soooooo good.

    Praying all goes well tomorrow .....MD Anderson is a GREAT place....I think you are very fortunate to have them nearby.

    Never heard of the honey thing (grea joke patrick...good laugh I enjoyed on that) ...but run it by the docs ....

    Keep us posted...we are with you!!

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Attitude...
    Matt, I can tell just from reading between the lines, that your attitude has changed. It's changed to one of acceptance, that's good....I think you are going to do fine now.

    BTW, damn, like Tim said, you made me hungry for some BBQ now...just where up the road do you live, LOL....

    Hoping you have a good day and they get your show on the road.

    Best,
    John
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Skiffin16 said:

    Attitude...
    Matt, I can tell just from reading between the lines, that your attitude has changed. It's changed to one of acceptance, that's good....I think you are going to do fine now.

    BTW, damn, like Tim said, you made me hungry for some BBQ now...just where up the road do you live, LOL....

    Hoping you have a good day and they get your show on the road.

    Best,
    John

    STOP!!!!!
    Stop with all this mentioning of good 'FOOD' already, remember people...........

    ' I STILL HAVE NO TASTE '..............LOL

    Just having a Tuesday morning laugh, but seriously best of luck to you Matt
    I hope all goes well and you can get this " Show on the road".

    Stay positive and have faith.

    God bless
    Tonsil dad,

    Dan.
  • fishermanljl
    fishermanljl Member Posts: 7
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    mask
    Matt, I found the anticipation of having the mask made was the worst part. I have had to have it done twice since my disease returned after the first time. Ativan is a blessing, too. I found that, if I count very very slowly it helped pass the time. I would go from 1 to 60 and then backwards. Sometimes even in Spanish. Anything to make the time go by.

    I had a PEG tube the first time and it was helpful in keeping my nuttrtion and meds up. I st a goal of doing a shot of tequila through the tube on the last day of radiation. It was a great way for me to celebrate the end of treatments. Set goals and stay strong.

    Lou
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    mask
    Matt, I found the anticipation of having the mask made was the worst part. I have had to have it done twice since my disease returned after the first time. Ativan is a blessing, too. I found that, if I count very very slowly it helped pass the time. I would go from 1 to 60 and then backwards. Sometimes even in Spanish. Anything to make the time go by.

    I had a PEG tube the first time and it was helpful in keeping my nuttrtion and meds up. I st a goal of doing a shot of tequila through the tube on the last day of radiation. It was a great way for me to celebrate the end of treatments. Set goals and stay strong.

    Lou

    James Taylor...
    or a CD of your liking to pass the time... 4 - 5 songs and usually it's done for the day.

    Word of advice though, when I was going through, I bought a new James Taylor CD - One Man Band. I left it at the facility while going through treatment, and listened to it everyday.

    I don't think I've listened to that CD since finishing treatment, June 2009.

    But it got me through with a little help from Xanax initially.

    JG
  • Ingrid K
    Ingrid K Member Posts: 813
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    Skiffin16 said:

    James Taylor...
    or a CD of your liking to pass the time... 4 - 5 songs and usually it's done for the day.

    Word of advice though, when I was going through, I bought a new James Taylor CD - One Man Band. I left it at the facility while going through treatment, and listened to it everyday.

    I don't think I've listened to that CD since finishing treatment, June 2009.

    But it got me through with a little help from Xanax initially.

    JG

    tonight's update
    I hope your next post will tell us that the mask has been made and you are on your way !