Welcome to my journey!

CSmiley
CSmiley Member Posts: 11
edited March 2017 in Head and Neck Cancer #1

Hello. My name is Chris, and I have recently been diagnosed with oral cancer. I wanted to offer a link to my blog where you can follow along in my journey with this horrific disease. I hope to shed light on what one might expect if they are unfortunate enough to find themselves faced in a similar situation. Please reach out to me if you have any questions. I am an open book, and find peace with this disease the more I share. God speed to you all!

 

http://smileysemojicancer.blogspot.com/

Cheers,

Chris

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited March 2017 #2
    welcome

    CSmiley,

    Welcome to the H&N forum, sorry that you are here and glad to see you are going to document your journey.  While I did not have a blog, I did keep all my numerous emails to my siblings where  I took note of my condition.

    I wish you a not too crazy ride and suggest (if rads and chemo) that you start drinking lots of water and swallowing often, have on hand all meds suggested, take meds early and keep your team informed on all changes.

    Matt

  • CSmiley
    CSmiley Member Posts: 11
    edited March 2017 #3
    CivilMatt said:

    welcome

    CSmiley,

    Welcome to the H&N forum, sorry that you are here and glad to see you are going to document your journey.  While I did not have a blog, I did keep all my numerous emails to my siblings where  I took note of my condition.

    I wish you a not too crazy ride and suggest (if rads and chemo) that you start drinking lots of water and swallowing often, have on hand all meds suggested, take meds early and keep your team informed on all changes.

    Matt

    Thanks Matt

    Matt, 

    Thank you for the advice. I have not yet reached out to a local cancer support network, so all the information I am receiving is off-hand from people who knew people. I know I have multiple surgeries lined-up, but we are not yet sure about radiation and chemo. They need to test the tumors attached to my lymph nodes. 

    Again, thank you.

    Chris

  • BlacksuitDC
    BlacksuitDC Member Posts: 18
    #4
    Dear Chris (CSmiley)

    My best advise right now is:  Go and eat everything that you love to eat.  Start now. Today.  List everything you love the flavor/taste of, the feel of and eat it.  If you have chemo  and/or radiation extra weight will be very important, but this is not about  weight.  This is about the joy of eating food. Just eat everthing you love. Be it hamburgers, fries, steaks, fried chicken, tacos, salsa and chips, mashed potatoes, candy, gum, chocolate, cinnomon toast, cookies, brownies, etc. Eat all of your comfort foods. Focus on BREAD and citrus fruits : sweet rolls, crackers, bagels, COOKIES, CAKE, popcorn, sweet rolls, hamburger buns, hotdog buns.  Eat salads, eat a lot of salads!  Eat nuts, fresh fruits, APPLES, all fresh citrus fruits and drinks (orange juice, pineapple juince). Go out and buy and eat  all the food/tastes/flavors you loved as a child. Make all of your mother's or families  favorite dishes. Dishes you really like. Enjoy them all. Turkey and stuffing. Pumpkin pie. Soft drinks. Get your fill. Spicy foods. Hot seasoned foods. BBQ.  Doctors don't tell you much about this.  They hope for the best.  I hope for the very, very best results for you, too, but you will not regret doing this. Not at all. You still have some time.  Go out to eat at ALL of your favorite resturants. Go back the next day and do it again. Enjoy carbinated drinks. If you like wine or beer - have it. I know these are scary times but sit in the sunshine. Talk and eat.  Eat and talk.  Have a McRib if they are at McDonalds.  Chilli dogs. Eat birthday cake. Buy Sprinkles cup cakes. If you love a certain food - eat it every single day.  2X a day. 3Xs.  And again (VIP): talk and eat.  Eat and talk.  You will be very glad you did.  It is so normal. People don't realise how wonderful it is to walk into a grocery store and be able to eat everything in it.  (Grocery stores smell wonderful.) This part of the immediate future you can control. This is really important.  I wish you well. Cheers! 

  • stevenpepe
    stevenpepe Member Posts: 234
    #5
    That is great advice from

    That is great advice from Blacksuit. If you haven't read between the lines of that post, the foods mentioned will be some that you may never enjoy again. Much truth to this.

  • Sprint Car Dude
    Sprint Car Dude Member Posts: 181
    edited March 2017 #6
    Spot on

    Spot on Blacksuit! I only wish I had this piece of information 7 months ago.

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited March 2017 #7
    BlacksuitDC said:

    Dear Chris (CSmiley)

    My best advise right now is:  Go and eat everything that you love to eat.  Start now. Today.  List everything you love the flavor/taste of, the feel of and eat it.  If you have chemo  and/or radiation extra weight will be very important, but this is not about  weight.  This is about the joy of eating food. Just eat everthing you love. Be it hamburgers, fries, steaks, fried chicken, tacos, salsa and chips, mashed potatoes, candy, gum, chocolate, cinnomon toast, cookies, brownies, etc. Eat all of your comfort foods. Focus on BREAD and citrus fruits : sweet rolls, crackers, bagels, COOKIES, CAKE, popcorn, sweet rolls, hamburger buns, hotdog buns.  Eat salads, eat a lot of salads!  Eat nuts, fresh fruits, APPLES, all fresh citrus fruits and drinks (orange juice, pineapple juince). Go out and buy and eat  all the food/tastes/flavors you loved as a child. Make all of your mother's or families  favorite dishes. Dishes you really like. Enjoy them all. Turkey and stuffing. Pumpkin pie. Soft drinks. Get your fill. Spicy foods. Hot seasoned foods. BBQ.  Doctors don't tell you much about this.  They hope for the best.  I hope for the very, very best results for you, too, but you will not regret doing this. Not at all. You still have some time.  Go out to eat at ALL of your favorite resturants. Go back the next day and do it again. Enjoy carbinated drinks. If you like wine or beer - have it. I know these are scary times but sit in the sunshine. Talk and eat.  Eat and talk.  Have a McRib if they are at McDonalds.  Chilli dogs. Eat birthday cake. Buy Sprinkles cup cakes. If you love a certain food - eat it every single day.  2X a day. 3Xs.  And again (VIP): talk and eat.  Eat and talk.  You will be very glad you did.  It is so normal. People don't realise how wonderful it is to walk into a grocery store and be able to eat everything in it.  (Grocery stores smell wonderful.) This part of the immediate future you can control. This is really important.  I wish you well. Cheers! 

    Blacksuit....

    In all the years I've been here I have never seen such  comprehensive list of great things to eat!!  I'm hungry just reading it!  Great job!

    I ate Mexican food and cheeseburgers deluxe for three weeks before treatment started. 

    P

  • Bionicguy
    Bionicguy Member Posts: 22
    edited March 2017 #8
    phrannie51 said:

    Blacksuit....

    In all the years I've been here I have never seen such  comprehensive list of great things to eat!!  I'm hungry just reading it!  Great job!

    I ate Mexican food and cheeseburgers deluxe for three weeks before treatment started. 

    P

    Food Commercials...

    I feel your pain. I'm 2 months post treatment. Very few taste buds and everything tastes like cardboard.

    I can barely stand to watch a food commercial on TV and feel like crying when I see one. lol. I'm in Houston and all week they have been showing the Houston Rodeo BBQ cookoff foods. It is like torture.

    "Oh, tongue, where for art thou"!!!

  • CSmiley
    CSmiley Member Posts: 11
    #9
    Update

    Greetings! First and foremost, I would like to thank each and every one of you. Your words of encouragement for one-another and your words of advice have been a blessing. I know I haven't participated much in the conversations, but I have been following along!

    So, I am five days out from my first surgery. I am pre-op: SCC, HPV-, Stage III (T1N1M0). I have one lymph node that is necrotic and because of this, my ENT sugeon will complete a bi-lateral neck dissesction on April 12th. She will remove all the nodes she can find, which will then be tested at pathology to determine the extent of the cancer's movement. I will also have the tumor from the bottom side of my tongue removed during the same surgery. It is on the underside of my tongue, just left of center and extends toward the side of my tongue.

    Surgery will then determine the type and amount of radiation I recieve. Chemo is unlikely, but not completely ruled out.

    Something interesting about my case: I am taking part in a medical trial for IRX-2. This new drug is supposed to increase long-term T-cell development which should help prevent the replaps of mouth cancers. The drug trial starts with a single dose of chemo, followed by 21 days of oral medications. IRX-2 is injected into the neck everyday for ten days prior to and immediately following surgery. Now.... I was randomized into the control group, which means I have recieved the single round chemo and the oral medications, but I am not and will not recieve the IRX-2 injections.

    I have just completed the 21 days of oral medications. My last appointment with the ENT surgeon was great. She can see a drastic reduction in size of the tongue tumor. She believes the initial round of chemo was the key factor in this development.

    If you have any questions about my treatment or my diagnosis, please do not hesitate to ask. You can also follow my entire cancer story at my blog:

    http://smileysemojicancer.blogspot.com/

    Cheers,

    Chris!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    #10
    Two months post is too soon

    Two months post is too soon to write off your buds.  Also, you may find you have to train yourself on tastes.  It may take rounds of try-ignore-try.  I'm three months post and that stuff changes every day.   What I figure is if I taste it once and it then goes away is that eventually it will be back.  Strangest part of mine is coffee and beer taste really bad, and I would have never predicted that.  

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