New to the club here..Larynx Cancer.

Stephie75
Stephie75 Member Posts: 95 **
edited November 2021 in Head and Neck Cancer #1

Hey all, 

My name is Stephanie, you can call me Steph as well. I'm 46 years old. I have T2N0M0 - P16 SCC (HPV+) Located on my true left vocal cord. 

The cancer was I am sure at T1 when this all began, but due to delays - well, here we go. Tis life! 

I was a smoker, quit about 10 years ago - perhaps longer... I quit with e-cigs. So about the time they came out. Then, I dropped that.

I have 7 weeks of radiation coming up. I'll be fitted for the mask next week - then starting the Radiation on the 8th of December. I can finally get my PET the 2nd - they needed pre-auth from my insurance company. 

I am not sure if I will be getting chemo. Ugh...

I hope it has not spread anywhere during this waiting. 

I have been a bundle of nerves, and I have been researching TOO much, and a lot of times it's best just to stop and quit obsessing about the future. 

 

One Crazy part is, I will be going through Radiation over Christmas, New Years, and my 47 birthday.

I haven't been in too good of spirits, so it doesn't bother me. 

I just hope I will be able to make it through radiation, I don't know if I would be able to make it through both chemo and radiation simultaneously.

The one thing I believe I am going to try, is to stay as active as possible for as long as I can through treatment.

I've gotten a lot of tips from all of the amazing people on here, and would like to say thank you! I placed an Amazon order today for some things. Smile

 

I hope everyone is having a wonderful Thanksgiving Holiday!

 

As a very good friend of mine always said, 

 

Onward!

Steph

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Comments

  • wbcgaruss
    wbcgaruss Member Posts: 1,183 **
    edited November 2021 #2
    Well, Steph Welcome

    To the club that nobody wants to be in although it is sort of an exclusive club.
    It sounds like your team has everything planned and are taking care of your authorizations, etc.
    You will probably get chemo with your rads and they usually give you chemo in the beginning, middle, and the end.
    Be as comfortable as you can and don't let your nerves overtake you, but I am with you this is upsetting.
    Depending on your weight you should be eating all you can right n0oew and lots of it and put on some weight.
    I'm not going to ask a lady her weight but if you are already sort of weighty you can ignore that.
    Yes stay as active as possible as long as you can it is good for you and you will get through this and many others have
    so you will too.
    One thing you should do is be sure your teeth are in good shape before going into this.
    You should have a recent checkup with your dentist and probably Xrays and any bad teeth repaired.
    Also if you have any really bad nonrepairable teeth they should be pulled.
    I am guessing your cancer team has told you about this as it's very important.
    Also during treatment but especially the rest of your life after treatment you are going to have to be
    very vigilant and active on your dental care.
    Also after you are in treatment awhile your saliva will get very thick and you will have to rinse
    your mouth out with a salt baking soda rinse and it can get bad so stay ahead of it and rinse as often as necessary, every hour, every half hour, every 15 minutes
    whatever it takes but stay ahead of it and you will be ok.
    Another thing you may or may not encounter during treatment is pain.
    If it occurs and you are having steady pain or on a regular basis then you want to stay ahead of that also
    and just take your pain meds on a regular schedule as needed like every 6 hours, or 4 hours so if
    this occurs just get with you cancer team and they will help you with this.
    But it is important to not wait till you are in bad pain to take meds get ahead of it.
    You got this and it is not easy and there are some tough times to get through but just take it one day at a time
    and before know it you will be over treatment on heading toward the rest of your life.
    So this is a great place with great people so stick around and we will help you through this the best we can.
    I am posting the baking soda and salt solutions below so you have them and if there is anything you need
    or any questions just throw it out here on the forum.
    I tell you all this not to upset or overwhelm you but to help and prepare you for this event.

    Wishing You The Best-Take Care-God Bless-Russ
    And Remember NEGU (Never Ever Give Up)

      Steph Here Are Recipes

    For the salt/baking soda mixes.
    Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.
    The trick is to stay ahead of it as best you can.
    There are no easy solutions but this will eventually quit.
    You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.
    Laying down directs it to the back of your mouth/throat area.
    Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.
    Wishing You The Best-Take Care-God Bless-Russ

    Mouth Rinse Recipes to Use During Chemotherapy

    Soda and Salt Mouth Rinse

    1/4 teaspoon baking soda
    1/8 teaspoon salt
    1 cup of warm water

    Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

    Soda Mouth Rinse: A Good Rinse for Before You Eat

    1 teaspoon baking soda
    1 cup of warm water

    Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

    Saltwater Mouth Rinse

    1/4 teaspoon salt
    1 cup of warm water

    Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

    Salt and Soda Rinse for Gummy Mouth

    Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

     

     

     

     

     

     

     

     

     

     

     

  • Stephie75
    Stephie75 Member Posts: 95 **
    edited November 2021 #3
    Thank you for your reply,

    Thank you for your reply, Russ.

    I've read a lot of your posts and I've also read your story. (Told ya I've been lurking!)

    Regarding the dental care they have not said anything. They gave me the recipe for the rinse. I have a sonicare, but I ordered a waterpic and a new toothbrush that's a waterpic and toothbrush in one, I'll also find some of those cheapo soft bristle toothbrushes at the drugstore. I will be flossing as well with the water pic. The water pic just sounds like it would be great to get slime out, and help when my mouth gets dry.

    I plan on taping my mouth shut at night like Don did (AKA Beagledad)... 

    I read they actually also sell artificial saliva at the drugstore. I haven't looked into that yet.

    I am sure there is more information they will give me during my fitting for the mask, and they may ask that I see a dentist. However, I have to many appointments coming up, I don't know how I will fit it in. My online chart is just getting so full it is overwhelming and I am not on that enjoys frequenting doctors. I am just more of a once a year type for my annual checkups...

    Thanks so much again for the tips!

    I may have missed it but I have read about using flouride. I believe they mentioned it. I forgot to order some. I should search for that on here. But I have read of people using flouride trays. There is a whole sheet in my paperwork on dental care. I am going to ask for scripts ahead of time for the mouthwashes as well.

    I also will ask for the port. I have small veins - they blew a vein a couple weeks ago already. If I am going to get chemo, I will definitley get a port. I may ask for one if they just plan on jabbing my a lot. 

    I put on some weight on purpose when I found out. At first, I didn't want to eat... The stress. But I was told to NOT lose anymore weight. So, I then gained some weight. Standing on a scale naked now at 5'2 now, I'm 120. So, I think I'm good weight wise. I like to be around 103-105. So, I feel uncomfortable and none of my clothing really fits well, and I honestly do not need more clothes!

    Thanks again and NEGU to you right back!

    Onward,

    Steph

     

  • wbcgaruss
    wbcgaruss Member Posts: 1,183 **
    edited November 2021 #4
    Very Good Steph

    It seems you are preparing as best you can.
    Like most new cancer patients, you are heading into a whole new thing and don't exactly know what to expect.
    Here is an article from Memorial Sloan Kettering Cancer Center that covers a lot on--

    Radiation Therapy to the Head and Neck

    https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-head-and-neck

    As far as weight gain before treatment here is a comment from an H&N patient survivor--

    Bulk up first

    Most treatments for head and neck cancer can negatively impact both your desire and ability to consume food, so don’t skimp on meals between the time you are diagnosed and starting treatment. Common side effects can include change in or loss of taste, mouth sores, dry mouth, pain, fatigue, nausea, and vomiting, which can worsen malnutrition. I was told to gain 10 pounds before treatment but ended up losing 50 pounds over six months, going from a high of 205 to a low of 155 pounds.

    And here is a recommendation from Johns Hopkins concerning oral health and checkup before starting treatment--

    Importance of Seeing a Dentist Prior to Radiation Treatment for Head and Neck Cancer

    Radiation treatment used during your cancer care can harm normal cells including cells in your mouth. If you go to the dentist before head and neck radiation treatment begins, you can help prevent serious mouth problems from developing after or during your radiation treatment. Side effects of radiation treatment often happen to a patient because their mouth is not healthy before the radiation treatment begins.

    I only mention this again because most treatment facilities recommend it.
    You are very well prepared for ongoing care and post-care but the pre-treatment dental exam is very important.
    As far as the fluoride trays not many people on here had them but that is my experience from reading the listings on here.
    I did not have them and have never heard anyone say on here that their team made them mandatory.
    You can talk to your team about oral care and decide.
    But here is a link to a downloadable Pdf guide from The University of Florida that completely covers--
    Mouth Care for
    Head and Neck

    Radiation Therapy

    Patients
    https://dental.ufl.edu/wordpress/files/2019/04/19-OMC-Head-Neck-Radiation-Brochure.pdf

    So I am Wishing you the best and keep us updated-Take care-God Bless-Russ

     

     

  • wbcgaruss
    wbcgaruss Member Posts: 1,183 **
    edited November 2021 #5
    Oh And By The Way

    I may be the King of the Lurkers.
    I was reading this site in 2012/13 during my first cancer episode of throat cancer.
    I never signed up until 2018 when I got my second cancer, a cancer spot on my tongue.
    At that point, I said I'm in might as well join up and see if I can help some folks and be part of thye community that has helped me so much.
    Wishing you the best-Take care-God Bless-Russ

  • Stephie75
    Stephie75 Member Posts: 95 **
    I'm really glad you did

    and I am certain a whole lot of other people in this group are as glad you finally signed up as well.

    I really wasn't ready to talk about my diagnosis yet. But considering I had read so much on here, I felt like I got to know some people (including you). I couldn't use the search function or something, and I was trying to find out why Phrannie wasn't posting anymore. When I found out, I was pretty upset about that. However, at least it sounded swift and she was finally "living" and not worrying after that last diagnosis. 

    P.S. Next time your in Honduras, try to get some more of that concotion you got when you were there. Seems to be helping you out ;)

    I will be updating as well, hopefully with positive news.

    I'll try to fit in a dentist appt. also.

    Onward!

    Steph

  • Remington25
    Remington25 Member Posts: 57 **
    edited November 2021 #7
    Holiday Treatment

    Steph ~ I also had treatment go over the holidays.  Surgerty was 11/18 and chemo/rad began 12/28 (so just after Christmas) but I even had treatment on New Years Day.  My cancer center opened up the radiation area for a few of us to make sure we stayed on schedule.  It wasn't fun, but I found myself more thankful for my catching it relatively quickly and I felt so comfortable with my medical team that I actually probably preferred the timing over another time.  I was able to spend time with my kids (some days I didn't want to be near anyone, but it was nice knowing family was around when I wanted to see them). I wish you well.  Please communicate with your medical team continiously because if they are anything like mine they will do anything in their power to help you through it.  Stay Strong!

  • Stephie75
    Stephie75 Member Posts: 95 **
    I love that title!

    Thanks Remington! Honestly, it really doesn't bother me at all. It just occurred to me one day. I know exactly what you mean when you mention "Some day's I didn't want to be around anyone" Right now, that is most days for me. I can't imaine going to Holiday celebtrations and attempting to act like I was just GREAT!!!! I'm hanging in there.

    You know, this site has made me stronger. I want to be as strong as all of you. I want to be a warrior, and kick the crap out of this!

    I want to come on here and tell everyone I got a scan back a few months after treatment and "NED" and continue giving that joyful news and hope to everyone at every checkin!

    I don't have to turn 47 this year, haha. I'll be recovering. I get to skip that and stay 46 another year as well :)

    Thanks so much again for your kind words, 

    -Steph

  • motorcycleguy
    motorcycleguy Member Posts: 398 **
    edited November 2021 #9
    Steph,

    In my opinion, you're in the right place. There's nothing like getting information from people who have "been there".

    I recall doing research on my Nasopharyngeal Cancer, and it scared the heck out of me! I believe a lot of information is old, and modern treatment is much more effective.

    I have lots of advice - but I'll just start with: you WILL get through this!!

    Hang in there, and stay in touch,

    MG

  • Stephie75
    Stephie75 Member Posts: 95 **
    edited November 2021 #10
    Dental Update for Russ!!

    Well, I was able to get in to see the dentist tomorrow at 12:00PM... That gives me plenty of time so I can make it to my mask fitting by 4:00PM across town!

    I HAD to make you proud of that!! 

    Your tenacity has proved to be very worthwhile, Sir!

    -S

  • Stephie75
    Stephie75 Member Posts: 95 **
    Thanks!

    I feel I am as well. Actually, I know I'm in the right place :)

    This forum has helped me more than you can imagine. Yep, I have done research on mine and it does scare the crap out of you. Then the photos.... I just try to stay away from all of that, and hang out here.

    All of you are just amazing.

     

  • motorcycleguy
    motorcycleguy Member Posts: 398 **
    edited November 2021 #12
    Steph,

    Radiation and Chemo (if you need it) can be pretty intimidating. I'm over 2 years done with treatment, and I can still remember being scared.

    Looking back, though - it was challenging, but most of what the Oncologist told me wasn't as difficult as described. Everyone is different, though - and I think they want people to be prepared for the worst.

    Do you have an advocate to go with you to meetings with your Oncologist? It's really great to have someone else with you, to take notes etc. My girlfriend kept excellent track of things (like what pills did what and how often to take them). If there's someone in your life willing to help, I think it's a great idea. (People will surprise you - with offers of support!)

    Another thing to monitor is your outlook. If you find the people who help you keep your spirits up, when the going gets tough - I believe things will go much better.

    I suspect you're a very strong/positive person - so I think you're way ahead of me....

    MG

  • Stephie75
    Stephie75 Member Posts: 95 **
    edited November 2021 #13
    MG

    Yes, the initial appt. but he took no notes, as he was supposed to. We even had a list of questions. My husband was not helpful. He is not very good at these things, and he is NOT a good caregiver either. I am bascially going to have to be as healthy and strong as possible to go this alone. I don't really have a support group. Not much family here. My mother is, but she's avoiding me. People act different when they know you have cancer. It can be very isolating.

    I recall reading someone said to ask the doctor if you could record the visit on your phone. I may do that for now on.

    So, I came here and found all of you! I don't feel as alone.

    I am attempting to stay as positive as possible. Some days, it's really tough. I'm also starting to feel some scanziety about the PET Thursday. 

    By the way, I did a search for your name, and read your thread from when you got diagnosed. Seems you are healing up pretty quickly. :) Let's hope each day leads even closer to 100% and it stays that way!

    -S

  • LitlCJdoll
    LitlCJdoll Member Posts: 187 **
    edited November 2021 #14
    Maybe surprising

    Do not run down, short change or diminish your Husband, especially online open to the public!!

    Not nice.... Besides, he may well surprise you when push comes to shove.

    You have to give him a chance.

    Many men are not natural at caregiving, however, he likely has other fabulous traits and Super powers !

  • motorcycleguy
    motorcycleguy Member Posts: 398 **
    Steph,

    I think people struggle with what to say to people with Cancsr. I still struggle with it, sometimes.

    I don't mean to downplay the fight. It can be tough!

    But, the people on here are survivors, who will always do their best - to give you the support/advice, they think you need!

    MG

  • Stephie75
    Stephie75 Member Posts: 95 **
    I'm not - It's a fact, and I live with him.

    I've already been through two surgeries with him. I am not short changing him. He just has a very difficult time with it. ALL of it. He's stressed about this as well. When I get sick, he gets scared. Many men have a really tough time with it. I don't expect him to change. I just expect him to do the best he can. He hs to hold the fort down financially. I need to be as strong as I can possibly be. He has a very stressful job... I should have explained the situation a bit more thoroughly. He is like a deer in headlights right now, like I am. (at the doctors office)

  • LitlCJdoll
    LitlCJdoll Member Posts: 187 **
    edited November 2021 #17
    No caregiver

    I have No Caregiver. No one..

    Read my profile to see the extremes I have gone through with this cancer, 5 recurrences and it came back 9 months After my Radiation treatments, as a fast growing and invasive New Primary tumor .  I've lost count of all my surgeries.  

    My boyfriend/ significant other died this May 18th, from Stage IV Metastatic head & neck cancer.  His caregiver was great and she stays in touch with me frequently. She is now moving 5 states away..

    Randal fought cancers, 2 of them for 9 YEARS. He never once quit. He never stopped being in treatment, all the way to the end.  His daughter and others tried to force him into Hospice, but that's not what he wanted.

    Me and his caregiver were the Only people who Understood his DRIVE, his motivation to fight until the very end.

    I understand it because I am the same way..  You have to fight... No matter what this way takes from you, you still have to fight some more.

    " Fall Seven Times, Stand Up Eight"

    That was Randal... Through Leukemia ( Stage IV CLL) , Then he was hit with.Metastatic Stage IV head & neck cancer.

    Fall 7 times, stand up 8.

    Crystal

    You have to go for the kill/ cure, this first time. Because a second time usually isn't possible/ doesn't work/  and who would want to do it anyway. Go for it all the first go around.

  • Stephie75
    Stephie75 Member Posts: 95 **
    edited November 2021 #18
    Logan, Congrats on 13 years!!

    Well, it's not just really the radiation that bothers me so much. It's that the Oncologist that handles chemo (hematologist) literally told me he didn't think I could even handle Chemo, and that it could be toxic to me. So, I felt that I was too unhealthy to even get the treatment to treat what would kill me.

    That didn't really give me a great mind-set... It was a really strange encounter. It just wasn't a good experience. It's as if he had a bad day and took it out on me. (he was also a surprise, as originally my ENT told me I would only need a bit of radiation to clear it up) The Rad Oncologist is great.

    I'm not trying to whine about any of the treatment presented from my care team, and I am taking instruction. I think I have read too many horror stories on the internet, which is never a good thing to do.

    Dentist @ noon, then fitting @ 4:00PM

    PET on Thursday (If PET upstages me, chemo would have to come into play) It just all depends on that scan.

    Radiation Starts the 8th. I am going to just keep living as I am now. Cleaning, cooking, yardwork, things I need to do around the house... and continue with my regular exercise like normal. If I get tired, I'll rest when needed.

    OH, I have a HUGE Aloe plant outside, and that wil come in handy... Also, Aquaphor, and coconut oil. I even bought shirts that were port friendly. (not the flap kind) just shirts that have button down half vnecks -- I also bought a Ninja and Orgain. I have Boost as well.

    I am afraid to get a feeding tube. I don't want to get lazy and stop swallowing and relying on it. With the MM, and lidocain, if it's still that bad - I don't know. I would then have to. 

    I'll have my teeth prepared after my appointment tomorrow, and he'll call. my in special mouthwash, and flouride, etc...

    I'm doing the best I can, and I guess if I have to up that to giving 150-200%, that's what I'll have to do. Laughing

    One my thing... When I first moved into this house (it been 8 years) The woman 2 doors down had "the voice" I never knew what was wrong with her, and I did not ask. However, she passed away in 2018 from a "brief" battle with cancer. I have not wanted to talk to her husband John about it, but I am willing to bet it was throat cancer. Once you hear the voice, you can't "unhear" it.

    -S

     

  • Stephie75
    Stephie75 Member Posts: 95 **
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  • Stephie75
    Stephie75 Member Posts: 95 **
    edited November 2021 #20
    13 Years!

    Again, that's so great to hear! to another 13 more, and then some!

  • Stephie75
    Stephie75 Member Posts: 95 **
    Crystal

    I know you don't. I've read a lot of your posts. I actually was going to reach out to you privately and let you know that I can be a friend. If you ever need to talk or anything. You have been through so much. I cannot even imagine.

    If only you lived in the same town I did. I could help you.