T minus 20 ... Radiation for SCC on lower tongue and in the lymph nodes

behindthepen
behindthepen Member Posts: 11
in Head and Neck Cancer #1

Got fitted for my mask today.  My first radiation is Oct 6; it feels like a year away, but I'm sure I will be in the middle of it before I know it.

My cancer journey started Aug 3, when I was told the lumps in my neck were lymph nodes that had SCC that had metastisized from "somewhere", but we weren't sure where.  (Technically this is my 2nd journey, i had a melanoma removed from my back about 8 years ago, which was pretty uneventful).  Knowing that it is SCC helped a little since we didn't know the primary site, but the wait until surgery on Aug 24 also felt long.  The PET scan didn't show any signs of primary tumor, which was a little unnerving.  My ENT scheduled surgery to possibly remove tonsils and a neck dissection for the lymph nodes.  But when he went in, he found the tumor at the base of my tongue.  Luckily only took our 2cm of mass, no tonsilectomy or neck dissection.  In some ways, we were relieved that we actually found a tumor, since now we knew what we were dealing with.

I'm a 47 y.o. male non-smoker, so no surprise they found HPV-16.

Unfortunately, my family has dealt with too much cancer.  My wife's friend has a son who was just finishing his chemo when I got my diagnosis.  3 years ago, my wife's brother lost his 5 year battle with brain cancer.  My family has been very active with the ACS Relay for Life, and my wife raised a bunch of money for cancer research running 2 marathons in memory of her brother, one of which was the 2013 Boston Marathon, just days after he had passed away.  So it seems unfair to us to have this latest bomb dropped into lives.  But we will deal with it.  The prognosis is good, and we know what we're up against.

I'm in pretty good health -- everyone asks me how I feel and I have to tell them that I'm in the best shape of my life.  I play hockey a couple of times a week, which I am really going to miss this Fall.  But I am pretty intimidated by all the descriptions of what I am going to experience with the radiation.  Early on, my oncologist said my recovery will depend on how "motivated" I will be.  Even when she elaborated on what she meant, I didn't completely appreciate it until today, when I met with the radionc nurses, and they started to describe the remedies I am going to need for my mouth, teeth, skin, etc.  Not to mention the nauseau and constipation from the chemo. 

My caregiver team is awesome.  My wife is ready to handle my new diet, and I know she and the rest of the team will keep me "motivated" to hold my weight as much as possible.  I also know I'm getting some of the best medical care in the world.  So as I said in another thread, I'm looking at this as just a blip.  But I'm still a little intimidated about the next 3 months.  

I just discovered this forum today, this place is awesome.  I know how much work it can be to moderate these places, so thank you, thank you, thank you to everyone who manages and contributes here.  

Would love to connect with any other HPV-16 cases out there.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    i was hpv+

    behinddthepen,

    Well you sound ready to talk recovery (you are so prepared).  One thing to remember is to drink lots of water and swallow often.  Take care of the hydration and nourishment and two of your biggest foes are defeated.

    Stay on top of side effects and keep your wife and team informed on ALL changes.

    Most members get a smattering of side effects and dodge many.  I hope you have an uneventful ride.

    Matt

  • MJG1
    MJG1 Member Posts: 137 Member
    edited September 2016 #3
    HPV 16

    Hi,

    My husband was diagnosed with Squamous Cell Carcinoma, P-16, right base of tongue, right tonsil, and four symphnodes on July 2.  We live in Missouri and he is being treated at Siteman Cancer Center on the Barnes Jewish Hospital Campus in St. Louis.  He is at least stage III (we haven't asked) as he is in a study which takes stage III or higher patients that are healthy otherwise.  His plan is 9 weeks of Abraxane with Cisplatin every 3 weeks.  This portion has been a ride already.  Fatigue, some nausea, Type II diabetes onset and roaring like a lion, blood pressure issues, white cell count issues.  It has been difficult, but the part I really dread is after the first 9 weeks he goes into a 7 week plan of Cisplatin every 3 weeks and radiation daily for all 7 weeks.  The part that really scares me is the horrible radiation side effects so many experience.  The great news for us is the Dr. working with my husband has been using this plan for 6 years with great success.  Best of luck to you.

  • mrspaul
    mrspaul Member Posts: 24
    #4
    My husband is going to begin

    My husband is going to begin chemo soon for his SCC - cancer was in the tonsils and left lymph node.  The tonsils have come out - we are at the Dana Farber Cancer Center in MA.  I find out all the side effects, how to care for my husband on wednesday when we have a chemo teach appointment.  My husband will have nine weeks of chemo - all I know for now is it is a three agent treatment - my husband had a port implanted on Friday the 9th.  After the chemo is over, then another PET scan will be done to see if they will remove the lymph node then do chemo/radiation or go straight to chemo/radiation.  I am mostly afraid of the radiation because of all the side effects I am reading about.  

    I want to ask a question about this "mask" - is it like a 'helmet' on your head, a true 'mask' on your face - with eye holes, mouth/nose holes....can anyone give me like a description....

    thank you

    ellen

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    mrspaul said:

    My husband is going to begin

    My husband is going to begin chemo soon for his SCC - cancer was in the tonsils and left lymph node.  The tonsils have come out - we are at the Dana Farber Cancer Center in MA.  I find out all the side effects, how to care for my husband on wednesday when we have a chemo teach appointment.  My husband will have nine weeks of chemo - all I know for now is it is a three agent treatment - my husband had a port implanted on Friday the 9th.  After the chemo is over, then another PET scan will be done to see if they will remove the lymph node then do chemo/radiation or go straight to chemo/radiation.  I am mostly afraid of the radiation because of all the side effects I am reading about.  

    I want to ask a question about this "mask" - is it like a 'helmet' on your head, a true 'mask' on your face - with eye holes, mouth/nose holes....can anyone give me like a description....

    thank you

    ellen

    mask

    mrspaul,

    The mask is like a mask not a helmet.  It is form fitted to the patient and feels like a warm facial when it is being made.  When finished, it has a number of quick release wingnuts which make a partial  turn to lock in place.  Mine had eye holes, some do not.  The plastic mask is made of mesh, so your sight is not blocked off completely.  I also had a mouth opening for my mouth insert which I held in my teeth..

    I never liked the mask, but came to appreciate it.  I took 1 lorazepam tablet every session.

    Matt

  • Tmclaren
    Tmclaren Member Posts: 15
    #6
    Mask

    The mask is something that takes a little getting used to but the radiation treatments are pretty quick so it goes by pretty fast.I also tried to take lorazepam before my treatments just to calm me down through it so maybe you could as your oncologist for some of those to get you through .When they were making my mask they said they could make mouth and eye holes but I  didn't bother .Just remember it's all part of the process to shrink the tumors so I would just lay back and imagine the tumors shrinking and think F#CK cancer and it seemed to help .You will get through this just remember it's part of the process in saving your life .Cheers Tammy

  • behindthepen
    behindthepen Member Posts: 11
    edited October 2016 #7
    2/33 done

    had my first 2 rads last week at MGH.  4 more this week (get a day off due to holiday), plus my first Carbo-Pax this week.  Feeling some fatigue is about it so far.  Played hockey after #1, and am hoping to get a few more skates in before I start to feel worse.  But I guess I wouldn't be the first hockey player to retch on the bench.

    I was a little surprised by the adrenaline or whatever I feel after getting out of the mask.  I guess my brain doesn't like being immobilized.  Nowhere near bad enough to take lorezapam, I was just hoping that listening to he Dark Side of the Moon would relax me a little more.

  • MemphisTn
    MemphisTn Member Posts: 41
    #8
    You'll Do Great

    Only on a couple occasions did I take any klonis or ativans for my sessions. Hang on to that desire to skate, you'll do great! 35 visits for me, the mask didnt bother me much. In the middle of it all, i was just tired and would just about fall asleep during treatment. Keep your pain meds and ativans close after the 2nd week just in case, but, going into it with a good mind set will do wonders for you! God blees you and your family!

    much love,

    -PC

  • SteveG1717
    SteveG1717 Member Posts: 2
    #9
    Hi Behindthepen!

    Hi Behindthepen,

    I'm fairly new also. We have many details in common for our situation. I too was diagnosed HPV-16 throat cancer (mine is unknown primary - lymph node positive, biopsies all negative in July this year). I'm 49, live in southern NH.

     

    I am currently finishing week 4 of radiation and had chemo treatment of cisplatin #2 of 3 total yesterday. 

     

    My 2 cents on approaching the whole treatment/recovery cycle in order of importance:

    • Have a good medical team with appropriate diagnostic and treatment experience/ability.

    We are lucky to live in populated areas with lots of experienced, well funded, and leading edge facilites, so this one is a plus right out of the gate!

    • Communication!!!

    I know like me you probably did A LOT of reading and research of potential side effects and recovery issues. This can be scary and a bit overwhelming. Every week will be different for you as you progress, just keep informing your caregivers of any new issues the day they begin. Also, check in here for specific issues and how all the wonderfull veterans dealt with them. For most of the common stuff there are are many solutions to treat or help mitigate each one. Never hesistate to take the advise. Need a PEG? Get one. Got hiccups or constipation or skin irritation? Ask, get the remedy and use it ASAP.

    • Attitude/Motivation:

    Stay positive.

    Rely on your family, friends, and knowledgable support groups like this community here.

    Limit your expectations and appreciations to a weekly basis. Recognize every win! I'm headed to week 5 for radiation and am still eating 80-90% of my food, have a sunburn on my colar bones (big whoop LOL). Keep laughing, and enjoy activities each week. 

    PEG tube - recommended to get it prior to treatment starting - It seriously freaked me out but is pretty much mandatory and you'll be suprised that you eventually adjust to it.

    Teeth issues - For me I had to get them all out. DO NOT allow your dentist to talk you into getting $7-10 thousand dollar temporary dentures. This was the one fraudulent/misguided piece of advice I got from a medical care pracitioner to date. Dental insurance in the US is the only thing less regulated, inadequate, and punitive than health insurance. Your treatment will be changing your jaw line, bone composition etc. Temporary dentures will be useless even if you go in every 3 days for adjustments for weeks. Then this is followed by weeks of PEG feeding where they are useless anyway. By me saying yes to the procedure, they sucked up my entire $13K "rainy day/ OMG I'm gonna be at 60% pay disability" fund prior to my first oncology/raidiation treatment. Even when this bumps happen, don't dwell on it. Take it week by week.

    Learn from your mistakes or overcome incorrect presumptions- I thought I could keep the weight up well with little effort. I'm 6' 1" tall and 3 years ago weighed 245 lbs. So I kicked up my fitness and diet and got down to 200 lbs heading into thissituation (figures right?! haha). So when the doc told me, hey pig out all you want now! I thought, wow too easy! But it isn't. Get your caloric target per day (mine is 2800), share it with your SO. Try to meet it even when not in the mood. 

    Every thing we do stay happy, informed, proactive and speedy with the reactive will help shorten recovery time and potential issues later on!!!

     

     

    Best of luck to you and yours!

     

     

  • behindthepen
    behindthepen Member Posts: 11
    edited October 2016 #10
    today was 15/33 rads, and

    today was 15/33 rads, and have done 3/6 chemos.

    throat is giving me trouble over the last week.  starting to be more aggressive in treating the discomfort.  humidifiers cranking through the house.  I started using Arm&Hammer saline nasal spray to get some moisture into the back of my throat where most of the discomfort is.  Biotene a few times a day, ACT dry mouth lonzeges.  Xylitol tabs in my mouth at night.

    Also have been sticking with throat exercises that the Speech Language Pathologist prescribed.

    Right now I'm just using advil for the pain, but have the magic mouthwash teed up.

    Luckily, I've been able to avoid the Zofran.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited October 2016 #11
    45% of the way

    behindthepen,

    Keep drinking water and swallowing, stay hydrated and try for 3k calories a day.

    I used plenty of magic mouth wash, it was my friend in pink (best friend).

    Keep hanging in there, it is a routine of (slight) misery we each followed.

    Sounds like you may be planning a modified Thanksgiving dinner this year.

    Swish and spit on.

    Matt

  • behindthepen
    behindthepen Member Posts: 11
    edited November 2016 #12
    I can't believe I have 29 down, 6 chemos down, and only 4 left!

    2 more this week, 2 more next week, and my 8 week plan will be done.  There have been good days and bad days, but listening to the doctors and nurses has helped a lot.  

    Feeling better than I thought I would. Have been able to eat oatmeal eggs some soups to balance out the Boost. Weight loss about 12 lbs. 

    i did have to give up hockey for now, but my motivation is to get back asap.  

    Thanks evryone here for all the suggestions and support. 

  • Josephwc
    Josephwc Member Posts: 69
    edited November 2016 #13
    Hang in there

    its nice to read about your positive attitude. I didn't have chemo but I did have rads. Things do seem tough at times and the healing is long and drug out but it does happen. keep holding onto that positivity and it will happen.

    joseph

  • The Gander
    The Gander Member Posts: 5
    edited January 2017 #14
    I'm a Newbie, needing support in 2017

    Still need to see Dentist, Stage III SSC (HPV) under tongue and major tumor in chin area. Told 8 weeks of Chemo and 8weeks of Radaition (5 Days a Week). This is my 3rd time to ride the "Monster", neck area and lymph nodes gone most of my tongue gone- grafted tongue Speech impairement.   Told this was my only option, no more surgury.   I see what I have coming, can I "beat this?"    Thank you!    I bid you Peace.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #15
    Welcome Gander....

    Wow....you have really been through the mill....and made it.  So yes....I really believe you can beat this 3rd time in the rodeo.  Maybe three times is the charm.  I wish you would have started your own thread....and told your story.  I've been through it twice, and am knocking on wood that two is my "charm".

    p

  • Trampcycles
    Trampcycles Member Posts: 7
    edited January 2017 #16
    Proton Therapy

    Does anyone have experience or is anyone undergoing proton radiation therapy?

  • Trampcycles
    Trampcycles Member Posts: 7
    #17
    Also, is there anyone out

    Also, is there anyone out there who has not lost any teeth? Is it even possible to keep your teeth if they are in decent shape prior to treatment?

  • Trampcycles
    Trampcycles Member Posts: 7
    #18
    Also, the typical radiation

    Also, the typical radiation seems to be pretty standard at 35 treatments. Isn't there some measure for a diminished amount of treatments given the nature of the cancer? For example, if there are not signs of cancer in the PET/CT scan and the cancer appears to be contained in one tonsil and one lymph node it would seem to me to require less bombardment of sorrounding tissue to ensure destruction of any residual cancer cells. It seems that Dr.s are appling a "better safe than sorry" approach no matter what the specific situation might allow for with respect to "the odds" of survival. In other words, it seems that Dr.s are highly influenced by overkill as a standard methodology. I guess that makes sense but it also implies that they don't really have a very precise knowledge as to what will work at various levels of need for radiation. Seems kinda crude to me.

     

  • Trampcycles
    Trampcycles Member Posts: 7
    #19
    Teeth loss

    Also, is there anyone out there who has not lost any teeth? Is it even possible to keep your teeth if they are in decent shape prior to treatment?

  • Trampcycles
    Trampcycles Member Posts: 7
    #20
    Squamous cells

    Also, does anyone know how it is that squamous cells, which are supposedly surface, or near the surface skin cells, can become cancerous without showing signs on the surface of the oral cavity? I'm sure they can, as there is ample proof of it, but I just don't know enough about such cells to understand the mechanism. I have seen pics of obvious indications of tonsil cancer as lesions or sores but the majority of tonsill cancers seem to be non-visible even with endoscopy. And if cigarette smoke is a major cause, why wouldn't the affects of the smoke be primarily, if not exclusively, on the surface cells?

     

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