Introduction

Hi! My name is Joanne.  I was diagnosed with Stage IV A (T1N2bM0) cancer.  Treatment plan is 7 weeks radiation, 5 days a week - chemo (cisplatin) 3 cycles, 3 weeks apart.  I will have a PEG tube as I weigh 109 lbs dont have much weight to spare.  I go to have my radiation mask made Friday and Monday will be the planning and mapping for the radiation.  I have a bunch of appointments the next week...hearing test, chemo educator, gi appointment.  My first chemo cycle is set for June 21.  I'm hoping the radiation will start June 20.  Thanks for listening :) Look forward to talking with youe guys as time goes on.  Just wanted to introduce myself!

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited June 2016 #2
    welcome

     

    Joanne,

    Welcome to the H&N forum, sorry you are here, but it sounds like your ticket has been punched.   We have a few new members right now to share what they have learned. 

    Be prepared and keep your  team informed on all changes.  Ask questions here and get answers with experience.

    Drink lots of water and swallow often.

    Best of luck,

    Matt

     

  • RottiesMom
    RottiesMom Member Posts: 167
    edited June 2016 #3
    CivilMatt said:

    welcome

     

    Joanne,

    Welcome to the H&N forum, sorry you are here, but it sounds like your ticket has been punched.   We have a few new members right now to share what they have learned. 

    Be prepared and keep your  team informed on all changes.  Ask questions here and get answers with experience.

    Drink lots of water and swallow often.

    Best of luck,

    Matt

     

    Thanks Matt!

    Thanks Matt!

  • wmc
    wmc Member Posts: 1,804
    Welcome to H&N group

    Welcome and sorry you need to be here. It can be a rough ride, but you will get all the support we can. Many have already gon down this path and you will make it as well. We are here for updates, and also when you just need an ear to listen. Like Matt said keep swallowing and stay hydrated. We're open 24/7

    Bill 

  • Josephwc
    Josephwc Member Posts: 69
    Welcome, and I hope your

    Welcome, and I hope your journey is as pleasant as it can possibly be. I've never gone through Chemo but I am a week out of radiation. Nothing is fun but we will get through this and be stronger in the end. I have to remind myself daily but I think joining this group helps. You aren't alone and there always seems to be someone who is listening. 

     

    Dont hesitate to ask a question someone will answer.

    good luck speedy recovery!

  • RottiesMom
    RottiesMom Member Posts: 167
    Thank you!

    I just wanted to say thank you for the welcome and support!  It does make it a little easy being able to talk with those walking the same road!  I look forward to talking with you all.  Again, thank you!!

  • swopoe
    swopoe Member Posts: 492
    Welcome. My husband had

    Welcome. My husband had radiation, cisplatin, and surgery for his cancer. He is doing great at 4.5 months out of treatment. I hope for the best for you too. Prayers and good luck as you begin your journey!

  • nita52
    nita52 Member Posts: 4
    base of tongue cancer

    hi to all. i have been looking for a support group for a while now. i was dignosed last november with cancer on the base of my tongue and sides...caused by  HPV.  I was 51, non smoker, casual drinker. i live in a small town and havent been able to find and support for this type of cancer. i have had , among other things, since last November, 35 rounds of radiation and 2 of chemotherpy.i was supposed to have 3 but i  had a very difficult time with the second, so we decided that would be enough. I had an experience during the treatments in which I barely made it. My Dr. had prescribed me a Fentenoyl (sp) patch after the morphine wasn't handling the pain. The first morning after applying the patch and taking a breakthrough dose of morphine I laid down for a bit. (I had some time before being picked up)The next thing i know it's 2 days later and i am in ICU. It was just luck that my son was to pick me up for a radiaiton app't ... ad he knew i wouldnt leave the place we were renting. long story, but he climbed up the fire escape and found me unresponsive. he called 911. My throat was constricted with phlegm from the radiation. They worked on me for hours, i ended up having to spend 11 days in the hospital. The "official reason " given me was that I wasn't used to taking opiodes , so it slowed down my heartbeat , I wasn't breathing because of the phelgm, and i had a short neck, so possible sleep apnea. so here it is, 3 months after treatment, and if i thought the treatments were the worst part of this horrid illness, i was wrong. since then i have suffered, not only with pain, but dry cough, phlegm, lethargy, bouts of what i call brain deadness,lympedema, etc..........oh you guys all know what it's like. The dr's kep telling me i am doing well. I go to Vancouver tommorow to have a PET scan. I guess i am here cause misery loves company, but i also love reading the success stories. i  feel so bad for those worse off than me. thankyou for reading this. 

  • SusanUES
    SusanUES Member Posts: 125
    edited June 2016 #9
    Joanne, I just LOVE your horse!!

    Is that Rottie?  He's beautiful, what a darling!  Sorry to hear of your diagnosis but you've come to the right place...a wealth of information, very kind and caring people, a place to vent and applaud.  Like Matt says, your ticket was punched and you are along for the ride with us.  It may be bumpy at times but you will make it through.  I'm a year out (half of tongue removed, six weeks of rads) and I've already gone on a great holiday, resumed full social life, working full time.  Yes, some aspects are changed but there is happiness and there is joy ahead...count on it!

    Nita, I am sorry to read your note...hopefully, Vancouver will yield good results for you.  Blessings.

  • RottiesMom
    RottiesMom Member Posts: 167
    The Horse

    Hi Susan...thank you for the welcome!  The horse is Sara a painted pony.  She was rescued by an organization here.  She was starved and lost her right eye to abuse.  No one could go near her but the woman who runs the rescue. She was put by us, and little by little she began to trust me. We are fostering her, but plan on adopting her.  This us our first experience with horses (originally from NYC).  I have 2 Rottweilers, brother and sister, I'll have to post pics of them.   I am strong, I am ready to fight this, and I will win!!  

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Nita

    Sounds like you had a rough go of it!

    My husband uses fentanyl patch with percocet for breakthrough pain.  Morphine while undergoing treatment.

    Hope things start turning around for you soon.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Joanne!!

    To the club nobody wants to join....however, since you're in need of support, let me tell you we are the best place on the internet. There are so many smart, supportive, kind....and humorous people in this forum....you'll feel like it's a little home away from home.

    I had the same treatment as you....7 weeks of rads....and 3 chemo's 3 weeks apart.  Also, like you....I was thin to begin with, so they gave me a tube before I even got started on treatment.  That isn't where the similarities end, either :) ....my life is all about horses and dogs...rescuing, and volunteering at our local shelter. 

    Stick around here, this forum kept me solid during treatment...It's not an easy row to hoe, but we'll keep you tucked under our wings, and in our pockets until you emerge from the other side.  It's going to be ok!

    p

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    nita52 said:

    base of tongue cancer

    hi to all. i have been looking for a support group for a while now. i was dignosed last november with cancer on the base of my tongue and sides...caused by  HPV.  I was 51, non smoker, casual drinker. i live in a small town and havent been able to find and support for this type of cancer. i have had , among other things, since last November, 35 rounds of radiation and 2 of chemotherpy.i was supposed to have 3 but i  had a very difficult time with the second, so we decided that would be enough. I had an experience during the treatments in which I barely made it. My Dr. had prescribed me a Fentenoyl (sp) patch after the morphine wasn't handling the pain. The first morning after applying the patch and taking a breakthrough dose of morphine I laid down for a bit. (I had some time before being picked up)The next thing i know it's 2 days later and i am in ICU. It was just luck that my son was to pick me up for a radiaiton app't ... ad he knew i wouldnt leave the place we were renting. long story, but he climbed up the fire escape and found me unresponsive. he called 911. My throat was constricted with phlegm from the radiation. They worked on me for hours, i ended up having to spend 11 days in the hospital. The "official reason " given me was that I wasn't used to taking opiodes , so it slowed down my heartbeat , I wasn't breathing because of the phelgm, and i had a short neck, so possible sleep apnea. so here it is, 3 months after treatment, and if i thought the treatments were the worst part of this horrid illness, i was wrong. since then i have suffered, not only with pain, but dry cough, phlegm, lethargy, bouts of what i call brain deadness,lympedema, etc..........oh you guys all know what it's like. The dr's kep telling me i am doing well. I go to Vancouver tommorow to have a PET scan. I guess i am here cause misery loves company, but i also love reading the success stories. i  feel so bad for those worse off than me. thankyou for reading this. 

    Welcome Nita...

    ...how scary!!  The cough, the phlegm, the lethary, the chemo brain all slowly go away.  Remember you didn't just get done having the flu....recovery from this is measured in weeks and months....and for some things years.  My taste buds just returned last October...3 years out of treatment.  In June I was on vaction missing out on the wonderful meals we had out...and by October...I was in heaven.  LOL.  Just hang in there, and remember every week, something is a little better...

    p

  • RottiesMom
    RottiesMom Member Posts: 167
    Thank you!!

    Thank you Phrannie for the support and encouragement!  I am so thankful I found this forum.  I have 4 dogs-the 2 Rotties, a Pug (he's 13 and lost his hearing a year ago), a rescue hound mix.  I also have a 16 year old cat and 3 chickens!  I had my mask made yesterday...I look forward to talking more with you!  

  • Barbaraek
    Barbaraek Member Posts: 626
    Joanne

    You found the best group ever here on the H&N board. My husband is 10 months out from treatment for nasopharyngeal cancer, stage 4. He had a treatment similar to yours - 35 rads and 3 Cisplatin chemos. It is a difficult journey...but you sound like a great fighter. Please know that you can ask any question here, post any complaint, and share any victory. THIS is where I found my most helpful answers when grappling with problems and questions related to treatment. Keep us posted...we'll be cheering for you.

    Barbara

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Joanne

     

    Sorry to hear you have this crap but you are in the right place for getting help with questing’s and answers. Hope you continue posting and giving us updates on how you are doing.

     

    Welcome to CSN H&N

     

    Tim

     

  • RottiesMom
    RottiesMom Member Posts: 167
    Thank you Tim!

    Thanks for the welcome.  I am so glad I found this group. 

    Joanne

     

     

     

  • nita52
    nita52 Member Posts: 4

    Welcome Nita...

    ...how scary!!  The cough, the phlegm, the lethary, the chemo brain all slowly go away.  Remember you didn't just get done having the flu....recovery from this is measured in weeks and months....and for some things years.  My taste buds just returned last October...3 years out of treatment.  In June I was on vaction missing out on the wonderful meals we had out...and by October...I was in heaven.  LOL.  Just hang in there, and remember every week, something is a little better...

    p

    thanks

    thanks so much for replying and giving me hope....i had my PET scan yesterday..i'm still tired from the travel and whole thing. oh I cant wait to have a potato chip someday..ok, a big bowl full!! 

  • nita52
    nita52 Member Posts: 4
    new too

    Hi Jo-Ann.....i don't know what all those initials mean in regards to your cancer, but i had the same treatment. except i could not tolerate the 3rd chemo. I feel so bad for you, (the first time i ever said that about a skinny person..haha)but i came into this  overweight and have lost 50 pounds in 6 months. Thank goodness for the feeding tube. Keep strong and remember you are not alone.   Nita

  • nita52
    nita52 Member Posts: 4

    Nita

    Sounds like you had a rough go of it!

    My husband uses fentanyl patch with percocet for breakthrough pain.  Morphine while undergoing treatment.

    Hope things start turning around for you soon.

    thanks

    thanks so much for your reply. just finding this forum has lifted my spirits! i hope your husband isnt suffering... nita

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited June 2016 #21
    top of page

     

    Joanne & nita52,

     

    Visit the superthread for information.  At the bottom you will find out what most of the initials are for.

     

    Matt