quick hello and thank you

Hi, I'm starting chemoradiation on Monday, and although I just registered on this forum, I've been lurking for a couple of weeks on and off as I do research on what I'm up against. So by way of introduction... 

My name is Siobhan and I was diagnosed in early September with squamous cell carcinoma in my neck via a fine needle biopsy. Pain in my left neck along my jugular area while on a 10k run was my first symptom. That was in maybe March or April. No other symptom presented itlself until May when I got a lump in my neck which I ignored meaning to speak to my doctor at my next appointment. Long story short, by July i had significant pain in the lump and then fever following a case of pink eye. A couple rounds of antibiotics, an ER visit, an ultrasound and a biopsy later I got my diagnosis. 

Subsequent PET and contrast CT and physical examination have yeilded not a single indication of a primary. I have one 3 cm tumour in my neck and a couple of little suspicious looking lymph nodes next to that one big one. 

I'll be recieving 35 sessions of intensity modulated radiation to several areas of my neck and throat, and three Cisplatan chemotherapy session as inpatient treatment on the first day (Monday) midway and in the last week. 

Anyway, I wanted to join this forum, because I know I'll have questions and I know this is going to be a really difficult journey. And already I've found the insights shared by the members here to be absolutely the most helpful of any resource I've encountered so far in my research. So more than anything, I wanted to say thank you to everyone here who has shared their story and given generously of their insight and advice. I know there are people out there who wont register or join the discussion, so on their behalf as well as my own, I say thank you. 

Comments

  • Moki
    Moki Member Posts: 53
    Hello

    Hello. I also just joined the group. I had 2 surgeries in June and September and I just started IMRT last week. I have been in the misbelief status, moved to shock and now I am in the nervous but need to move on phase of the process. I will be only 1 week ahead of you for radiation so  we will go through it together. I'm still running even if I already feel tired and nauseous, I want to keep exercising, maybe a slower pace: I do not want the fatigue to win over me.

    Sending calming vibe for Monday your way.

     

    Monica

  • KTeacher
    KTeacher Member Posts: 1,103
    Welcome

    Sorry that you had to find us.  We are here to help.  If you haven't yet, read the Superthread, loaded with information for pre, during and post treatment.  Stay in touch, we will be with you through cyberspace.

     

  • papertiger45
    papertiger45 Member Posts: 6
    KTeacher said:

    Welcome

    Sorry that you had to find us.  We are here to help.  If you haven't yet, read the Superthread, loaded with information for pre, during and post treatment.  Stay in touch, we will be with you through cyberspace.

     

    Thanks, the super thread is

    Thanks, the super thread is what promted me to keep coming back to this forum. So very helpful!!!!!

  • papertiger45
    papertiger45 Member Posts: 6
    Moki said:

    Hello

    Hello. I also just joined the group. I had 2 surgeries in June and September and I just started IMRT last week. I have been in the misbelief status, moved to shock and now I am in the nervous but need to move on phase of the process. I will be only 1 week ahead of you for radiation so  we will go through it together. I'm still running even if I already feel tired and nauseous, I want to keep exercising, maybe a slower pace: I do not want the fatigue to win over me.

    Sending calming vibe for Monday your way.

     

    Monica

    Hi Monica, I'm glad to hear

    Hi Monica, I'm glad to hear you're able to keep running!!! I'm impressed and envious. My tumour is very bulky and hurts when my blood pressure goes up (for example running) so I've been sticking with walks these days. I've got some body weight exercises from my trainer I'm going to try to stick with at home during treatment as long as I'm able, but I'm guessing that might not last long. Are you getting chemo too? I'm not getting surgery, I half wish I was because it feels so weird having this growth in my neck, but my oncologist insists this is the best course of action for my particular case.

    I look forward to keeping in touch! 

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

    papertiger45,

    Welcome to the H&N forum, glad you found us, so sorry you need us.

    Check out the list of must haves in the superthread.  Start drinking lots of water and swallowing often (it matters) and take your anti-nausea meds before you feel ill.

    Best of luck.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Hi Siobhan  and Monica. 

    Hi Siobhan  and Monica.  Welcome to our family but I wish you didn't need to be here.  I just want to wish you good luck as you start your tx and let you know we will all be on the sidelines cheering you on and encouraging you along your trip.  please keep us posted on your progress and when you both finish tx, we will be here to celebrate with you as well.  it is a rough road but as you can see, we've made it and so will you.  stay positive, drink lots of water, eat as much as you can right now as you will probably lose a lot of weight.  check out the superthread at the top of list of topics.  there is great info in there about everything.  we will also be here to answer any questions you come up with.  we will always be here to help.

    God bless you,

    dj 

  • wmc
    wmc Member Posts: 1,804
    Welcome to the group papertiger

    Sorry you need to be here but it the best one for questions and support from those who have been there and really do understand. If you have questions or just had a bad day and need to vent, or are just scared this is the best place. Were open 24/7 and there is so many that helped pull me through the bad times, and well help you as well as support. Remember this is the Survivors group...........

    Bill

  • Moki
    Moki Member Posts: 53

    Hi Monica, I'm glad to hear

    Hi Monica, I'm glad to hear you're able to keep running!!! I'm impressed and envious. My tumour is very bulky and hurts when my blood pressure goes up (for example running) so I've been sticking with walks these days. I've got some body weight exercises from my trainer I'm going to try to stick with at home during treatment as long as I'm able, but I'm guessing that might not last long. Are you getting chemo too? I'm not getting surgery, I half wish I was because it feels so weird having this growth in my neck, but my oncologist insists this is the best course of action for my particular case.

    I look forward to keeping in touch! 

    No chemio for me, but I had 2

    No chemio for me, but I had 2 surgeries: I removed the parotid gland in June and than they removed the tumor together with the facial nerve where it was wrapped around + they did a nerve graft to reconstruct the nerve. I now have half facial paralysis with the hope to get movement back in 6 months to 1 year. When they removed the tumor they said they were able to get negative margin. They did about 30 biopsies during surgery (7 hours operation with 2 surgeons) and thankfully no lymp nodes were affected so they will not radiate my neck. I am doing the radiation in the parodit gland bed and beyond the ear to make sure that there are no cells left.

    I really hope not to lose too much weight: I am 115 lbs (5'3" in height) and even if I try I cannot bulk up in weiight. I have been like this since my early 20. After surgery I went down to 103Lbs and I looked anorexic with no energy. I was able to regain the lost weight in the last 6 weeks with a lot of exercise and a balance diet (no alcohol, no sugar, mainly veggies, nuts, fruit and protein shakes).

    All the best on Monday! Keep me posted

     

    Monica

     

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

    Welcome to the family here on CSN H&N, sorry to hear about your C but glad to have you here are part of group.

    Tim Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    Moki said:

    Hello

    Hello. I also just joined the group. I had 2 surgeries in June and September and I just started IMRT last week. I have been in the misbelief status, moved to shock and now I am in the nervous but need to move on phase of the process. I will be only 1 week ahead of you for radiation so  we will go through it together. I'm still running even if I already feel tired and nauseous, I want to keep exercising, maybe a slower pace: I do not want the fatigue to win over me.

    Sending calming vibe for Monday your way.

     

    Monica

    Hi Monica

    Welcome to you too, glad you found a place here on CSN H&N that makes you fell at home.

     

    Tim Hondo

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    wmc said:

    Welcome to the group papertiger

    Sorry you need to be here but it the best one for questions and support from those who have been there and really do understand. If you have questions or just had a bad day and need to vent, or are just scared this is the best place. Were open 24/7 and there is so many that helped pull me through the bad times, and well help you as well as support. Remember this is the Survivors group...........

    Bill

    Glad to have you, sorry you're here.

    Hi Siobhan,

     

    Even though I've been through the process, it is still difficult to read about someone else's diagnosis.  I'm so sorry you got hit with it.

     

    You're right, this place is a great forum for information, support, and venting.  No one really understands what we go through unless you've been there yourself.  Glad to have you here.  It's the club no one wants to join.

     

     

     

    Tom

  • Moki
    Moki Member Posts: 53
    Day 1

    Hello, how did it go? Thinking about you

    Monica