What to Expect

LumpinmyThroat
LumpinmyThroat Member Posts: 98
edited June 2014 in Head and Neck Cancer #1

Hello everyone.  Hope things are going well for all of you.  

I've been lurking here for a few days and felt it was time to say something.  My husband has HPV16+HNSCC (Stage IV) in his trachea and thyroid.  PET is scheduled for Thursday, so that dx could change a bit.  Reading the success stories here has been instrumental in keeping my sanity through this diagnosis process.

What is the chemo+radiation process going to be like?  I gather from reading that the average timespan is 7 weeks for radiation and then 3 rounds of chemo (which ranges from 6-12 weeks). Is that correct?  Also, has anyone done CyberKnife vs traditional radiation for HNSCC?  I had one oncologist tell me it was a "gimmick".  I don't know if I'm a fan of his or not based on that in-depth and thoughtful response to my question.

Bottom line is... I want to get my husband the very best of the best when it comes to treatments.  Finding out out what those are is proving to be challenging, so any advice is welcome and appreciated.

Comments

  • KB56
    KB56 Member Posts: 318 Member
    #2
    new diagnosis

    Well, really sorry you are here but there are a lot of good folks here that can help with the questions and what to expect.

    Most radiation seem to be in the 7 week range with most of us getting between 30 and 36 treatments tends to be the norm.   I had 34 and towards the end it was really tough.  You should read through the Superthread at the top of the discussion board as many of your questions will be answered.   We all respond differently to the radiation (and chemo) but it's not an easy road.... very doable with a full recovery and basically normal life and activity after but the road is full of ups and downs, some potholes along the way.

    My chemo was Erbitux and it was relatively easy compared to others.   I had it concurrently with radiation so 7 treatments over 7 weeks.  Really a cake walk compared with the radiation with the biggest noticeable side effect being a really bad case of acne which cleared up before I finished treatment.

    I see you are going to MD Anderson, which is obviously one of the best in the world.   I'm a fellow Texan, just a little north in Dallas.    Your husband can and will make it through this and the most important things is to stay positive and know in your mind and heart that you can and will beat this.    You will have great care so find a team of doctors that you are comfortable with and put your faith in them to treat your body and you/your husband's focus is on staying right in the mind with the "I will beat this" attitude.

    Next year when you look back on the treatment hopefully it will be a distant memory (mine pretty much is) but the road to get there is pretty tough...Your husband will have a few side effects/reminders of the treatment but honestly it's nothing that I can't live a full life and do pretty much whatever I did before this all started (other than spicy foods)!

     

    Keith

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Your husband

    Sorry you have to join our club.  The main thing to remember is that everyone is different and responds to treatment differently.  Radiation, we were told, is the worse for head and neck cancers, but very doable.  My husband has been thru 72 rounds of radiation and 10 rounds of chemo and there are others who have been thru more than that. 

    I think the main thing is to find a head and neck specialist who has been involved in your husband's type of cancer.  Our local ENT found my husband's first cancer.  But after treatment when the tumor, according to him, came back, we were referred to a head and neck specialist.  Both you and your husband need to be comfortable with your doctors and second opinions should be gotten.

    Wishing you both the best -- Sharon

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    hi, so sorry you need to be

    hi, so sorry you need to be here.  i had reg rad but there are a couple here who have had cyberknife.  i'm sure they will chime in.  my cancer was of the larynx.  if i remember right, the cyberknife is much easier on the patient than reg rads but being able to have that depends on each individual case, how bad, where it is and other things.  i don't think its a gimmick tho.  you may want to find a doc you like and trust.  although liking isn't always important if he is the best at getting rid of the cancer.    i wish your husband the best.  we will  be here for both of you.  please let us know what tx plan the docs decide to do.  check out the superthread, it is full of great information.

    God bless you,

    dj

  • Guzzle
    Guzzle Member Posts: 710
    #5
    Ladylacy said:

    Your husband

    Sorry you have to join our club.  The main thing to remember is that everyone is different and responds to treatment differently.  Radiation, we were told, is the worse for head and neck cancers, but very doable.  My husband has been thru 72 rounds of radiation and 10 rounds of chemo and there are others who have been thru more than that. 

    I think the main thing is to find a head and neck specialist who has been involved in your husband's type of cancer.  Our local ENT found my husband's first cancer.  But after treatment when the tumor, according to him, came back, we were referred to a head and neck specialist.  Both you and your husband need to be comfortable with your doctors and second opinions should be gotten.

    Wishing you both the best -- Sharon

     

    Sorry

    Your hubby going through this. Listen to the positives here though. I do hope to beat the spicy food embargo Keith (that can be your holiday challenge). Ive just done 33 rads and 3 chemotherapy. I finished last week. I have a sore throat and neck but remain active. I have a bit of fatigue. As said above sude effects vary greatly but listen to medical advice. At the moment I am relaxing and trying not to do too much. You will get some great advice here including practical advice on the superthread. There are some great people. Good Luck, G.

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
    #6

    Thank you so much for the kind replies.  This all seems surreal to me at this point because he appears and feels completely healthy.  I look forward to meeting with the first oncologist Friday afternoon and then MD Anderson, hopefully next week.  I know he is anxious to get his treatment started too.

    Anyone with CyberKnife experience, please chime in.

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    debbiejeanne said:

    hi, so sorry you need to be

    hi, so sorry you need to be here.  i had reg rad but there are a couple here who have had cyberknife.  i'm sure they will chime in.  my cancer was of the larynx.  if i remember right, the cyberknife is much easier on the patient than reg rads but being able to have that depends on each individual case, how bad, where it is and other things.  i don't think its a gimmick tho.  you may want to find a doc you like and trust.  although liking isn't always important if he is the best at getting rid of the cancer.    i wish your husband the best.  we will  be here for both of you.  please let us know what tx plan the docs decide to do.  check out the superthread, it is full of great information.

    God bless you,

    dj

    Welcome

    Sorry you had the need to find us but glad you did. My cancer was of the lower jaw. Initially, I had surgery followed by IMRT rads and Cisplatin (chemo). A year and a half later I had a tumor around my carotid that turned out to be an uncommon recurrence from the original cancer. With that one, I looked into proton therapy at MDA and SBRT at Mayo Clinic. I chose Mayo, mainly becuase the rads were 5 days vs. 7 weeks. That tumor is completely gone but yet another cropped up on the opposite side. I did Erbitux/Taxol (referred to as other chemo txs) to try to kill any rogue cells then had SBRT again. I'm waiting on a scan this Friday. Having said all of that, both proton therapy and SBRT can spare more good tissue but they are very targeted and don't suit every situation. Even though I did not choose MDA, I hear great things about them. I did see a local doc (St Louis)about cyber/gamma knife. I walked away knowing I wouldn't get a tatoo from that guy, so I'm sure it was just him that scared me. It's also very targeted so likely not an option. You are doing the right thing by looking into available options but at some point, you & your husband will put your trust in the right doctors.  Normally, they do radiation and chemo during the same time frame and it does get pretty rough. It's not the treatments that are bad, it's the side effects. The radiation tx itself is probably less than 15 minutes and doesn't hurt at all. I think my worst side effect from the IRMT was bad sores on my lips (not in my mouth). Some people have trouble w/mucus but I didn't. Midway thru my 7 weeks, I probably slept 20 out of every 24 hours. Know that your husband won't get every side effect and they come in varying degrees with the IRMT and chemo. Like the rest of us, just have to put one foot in front of the other and get through the rough spots. I think you will find yourselves fortunate to be at MDA.

    Sending prayers for an easy journey.

    Candi 

  • donfoo
    donfoo Member Posts: 1,771 Member
    #8
    Welcome to CSN

    Hi,

    Welcome to CSN. Great place to get real first hand advice from cancer patients and survivors. You have joined at a great time as you have the full journey ahead of you. Find doctors whom you completely trust then listen to them. Do not think ahead. For example, thinking about cyberknife at this point only adds confusion rather than clarity and focusing on the next steps.

    Each person brings their own history and unique cancer to the table. There is no one size fits all but there are fairly common treatments such as chemo and rads and surgery. Exactly how your husband reacts is totally unique and there is no predicting what happens other than he will make it to the other side tired and beat up, no getting around that fact.

    MD Anderson is at the top of cancer treatment facilities so rest assured his case is being reviewed by the very best.

    Cancer in the trachea/throat is less common here so remember all comments and suggestions are coming from people with different specifics. Treatment options might be quite different than the stanard oral base of tongue or nasal SCC.

    HPV+ staining is a good thing as treatment works very well on this type of cancer.

    Good luck,

    Don

  • PJ47
    PJ47 Member Posts: 376
    #9
    LumpinmyThroat said:

    Thank you so much for the kind replies.  This all seems surreal to me at this point because he appears and feels completely healthy.  I look forward to meeting with the first oncologist Friday afternoon and then MD Anderson, hopefully next week.  I know he is anxious to get his treatment started too.

    Anyone with CyberKnife experience, please chime in.

    I too was a non-smoker

    Healthy diet and exercise nut and they missed my cancer which was BOT SCC HPV 16+ with one involved left lymph node on my neck because I "did not fit the profile".  Hello all Docs out there, quit profiling people and get them tested!!!  They all said I was so "healthy".  Ha

    Anyway I made it through 4 surgeries and 33 radiation treatments so I know he can too.  You are going to a great medical center and I considered going to MD Anderson but they were slow to get back to me and I could not wait any longer to begin my radiation.  They have proton therapy which is why I was going to travel there, but I do not know if my insurance would have approved it.  Ask the MDs there about it ad see what they say.  I do not know much about cyber knife and I had TOMO/IMRT.

    I believe you both will be in good hands down there.  Take heart,

    PJ

  • wmc
    wmc Member Posts: 1,804
    #10
    Welcome to the H&N

    AS everyone, welcome to the group but sorry you need to be here. Before my surgery I was T4,N2,M0 [stage 4] SSC cancer of the Larynx and no HPV. I could  not have radation because of lung problems so, It was remove my larnyx or nothing at all. But...After the surgery they changed it down to T3, N0, M0. Yes they took my larynx and did radial neck disession and removed 86 lymph glands, but I am doing good  and no cancer for 8 months. The survival for this is really very good and you're going to about the best in the US there is. It can and will be a bumppy road he is going to go down but please remember he can get through it as so many here have before and are doing fine. He will have good and bad days as well but you can always ask any question you or your husband has and someone here will try to help you both through it. This it very hard on the loved ones/ caretakers sometimes more that the paitent. Try to keep positive and keep him that way as well and you will all get through this to gether. Prayers never hurt eithor so I'll add you both my list to pray for. I hope this helps in some way.

    wmc  Oct 2013

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #11
    welcome

    Lumpinmythroat,

    Welcome to the H&N forum, so sorry you find yourself here. 

    Sounds like you found a good cancer center and will soon have a treatment plan figured out.  Once the plan is known things will move fast, but don’t worry it is a learn as you go kind of thing, or react as you go, whichever the case may be.

    After your husband’s plan is known and the start draws nearer, we can flood you with helpful hints and tips to make his trip more bearable, just ask.

    I wish you both the best,

    Matt

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
    #12
    Thanks for the Warm Welcome

    Thank you again, everyone.  I will keep you all updated with what the various oncologists we are about to meet come up with!

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