desperate for tips on how to deal with Cisplatin and Radiation in Oral Cavity

nancytc
nancytc Member Posts: 70 Member
edited January 2017 in Head and Neck Cancer #1

Hi!

So on the 11th Jan. I went in for Robotic Surgery to search for my Primary Cancer. (I had been diagnosed in late December with 4a HPV16 SCC in my right neck lymph nodes (by lymphectomy), one removed and two other possibly infected.)

My surgeon removed both sets of tonsils and the base of tongue. No cancer was found during surgery. The tissues were sent of to the pathologist for careful examination. I got a call...YIPEE!!! from my surgeon on the 20th. A tumor was found in my right tonsil. As this surgery was for biopsy and not tumor removal, they will finish off the margin into my muscle with radiation.

My treatment will consist of 3 megadoses of Cisplatin three weeks apart, and 6 weeks of Radiation concurrently targeting my tonsil but pretty much radiating all areas bilterally in my oral cavity.

I am desperate for tips on how to prepare, cope, eat. What works, what doesn't. What to expect. Any info is so appreciated.

My radiologist was concerned with my weight (I worked hard to gain weight since I knew this was all ahead, and beefed up to 115 lbs - I am 5'1") but after this tonsillectomy procedure I am down to 110.

I feel I have a really good team - Santa Clara Kaiser Cancer Center. I have a nutritionist I will see every day and a team of other nurses.

I look forward to your help and encouragement!!!!!

Nancy

 

 

Comments

  • dygit
    dygit Member Posts: 40 Member
    #2
    Thoughts

    I had 2 lymph nodes and a small mass on my larynx that were diagnosed with squamous cell carcinoma. No surgery was done  - I had 33 rads and 7 weekly chemo.

    i would suggest talking with your doc about whether there is a need for a feeding tube. I had one and am glad I did. Also, ask about gargling/swallowing glutamine before and during treatments. It clearly helped me have almost no sores in my mouth and I did not need magic mouthwash. I also decided to go on the feeding tube about 2 weeks after treatment started - food tasted terrible and I felt that trying to swallow food as my throat slowly closed up, would create potential problems with food pieces getting stuck or scratching my throat causing sores. My two oncologists said I was in the top 1% of patients they saw because I had so few problems from the treatments.

    Check my other posts for more info. Also check the super threads  - lots of great info there! Best of luck to you  - you WILL get through this!!

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited January 2017 #3
    Hi Nancy....

    Yay!  They found the primary!!

    I didn't have SCC in the tonsil....but behind the nose.  My treatment was pretty much the same as yours, tho, only difference was 7 weeks of rads rather than 6 weeks.  I did have the 3 big doses of Cisplatin every three weeks....I called them my long days :).  With the big dose, I planned on an 8 hour day (they'd release me to go get my radiation, then it was back to oncology).  I didn't feel great for 4 or 5 days afterwards, but then I'd get 2 weeks of feeling pretty much ok...so the every 3 weeks thing worked good for me.

    The number 1 foundational things you must do all through this treatment is....water, water, water....hydration is SO important...and swallow, swallow, swallow....even if they give you a feeding tube....you must swallow something every day.  I had a tube, but I swallowed lots of milk for a long time...about 1/2 gallon a day.  It worked as hydration, calories....and it gave me the illusion that I had spit.

    Eat as much as you can and want, now....gain some weight before treatment....eat the things you love....cheeseburgers, tacos, spaghetti....whatever you love, cuz it's going to be a while before you can go back to these things.

    As you go through treatment....keep close to this forum....we literally will walk you through, holding your hand, as you go....no question is off limits....

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited January 2017 #4
    been in your shoes

    Nancy,

    Prepare, cope, eat?  That sounds easy enough.

    I think you need to develop the mindset that you are going to do everything you can to get through the next few months.  This is no walk in the park but with a few parameters “to do” fixed in your determination to get through this, the payoff may be in the type of ride you have.

    As p51 said, hydration & swallowing.  Add nutrition to that.  Nutrition in any way possible, liquid, solid, tube.  Normally I say 3k calories a day, but with your size, more like 1.5k to 2.5k a day.  It is almost without fail, eating will become burdensome (throat, mouth &tongue discomfort) and food will taste bad, to awful, to metallic, to cardboard (to just plain, “what the heck happened to my taste buds”).

    Have all the meds prescribed, picked up and at home.  If you need them you have them.  Nothing worse than Saturday afternoon and searching for meds.  Take all nausea meds before sickness arrives.  If the meds don’t work, let your team know.  There are many flavors of nausea meds to try.

    Keep you team  informed on ALL changes!  They may be expecting to see your issues and not tell you up front.  Some people get by with minimal discomfort and others go the other way.

    Make up a nice place at home with a favorite chair and blanket.  Prepare a pitcher with salt, soda and water mixture and have it at the ready for rinsing and spitting often.  It is just good habit to rinsing all the time.

    You will develop procedures on what works best for Mask time, chemo (get chair closest to bathroom), eating, sleeping, etc.  we may have hints to help, but do whatever works for you.

    That’s a start.

    Matt

     

    Oh, don't forget the music for rads.

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited January 2017 #5
    Matt brought up a couple things...

    that I left out.  The nausea meds....don't wait to feel nauseated before taking them....take them right away, and as prescribed....My Oncologist wrote me out a schedule for them, and I think that's why I didn't have a whole lot of trouble with the chemo....If they don't prescribe Emend, ask about it....you only take it the first couple of days, but it is a big gun when it comes to nausea.  Aside from the Emend, I took Compazine, Atavan, and Zofran...

    The other thing Matt mentioned is getting a chemo chair as close to the bathroom as possible.  It sounds a little like a joke, but it's not!!!  I have never had to pee so bad in my life.  Also, take a lunch to chemo....I didn't and was starving by the end of the day.  You'll probably find yourself dozing a lot during chemo...they give you a big dose of Benedryl before the actual infusion of Cisplatin....and it seems to knock people out cold.  Everybody in the chemo room was sleeping!!

    p

  • jkinobay
    jkinobay Member Posts: 298 Member
    edited January 2017 #6
    Another "hot tip" you might find helpful

    My run-in with HNC SCC was almost 10 years ago now (DOUBLE WHOOPEE) and almost exactly like yours but a mirror image in that mine was all on the left, which I later learned is usually the case.  Turns out SCC is blood-born and tends to migrate up and down the same side of your circulatory system which is bilateral in your head/neck area but separate.........meaning, if it shows up in your right neck, other likely spots would be the right tonsil, lymph nodes under your right arm, the right lung.............etc.  My chemo was Cisplatin weekly and 35 IMRT's.  My Onco tells me these days that the treatment protocols nowaday's have been somewhat lessened because the older methods turned out to be considerably over-kill.  Hope that is true.  But, here I am.........living to tell about it.

    BUT...........that's not what I wanted to mention.  Maybe someone else also mentioned it, but I highly recommend 100% pure Emu Oil.  You can easily find it online.  Amazon has it.  I think it is available in a lot of places.  But, here's the deal, if you start using it now to condition the skin in the area prior to treatments and then use it religiously during the treatment phase, it will fantastically and miraculously reduce the "sunburn" effect.  Very important that you apply it frequently BUT MOST IMPORTANTLY.........do not use it during the actual treatment.  I had two bottles...........one in the house and one in the car.  I made sure that after a shower the morning of the treatment that I DID NOT USE IT until after the treatment.  So, when I got in the car I applied it immediately.  Many of the MedPros in my Chemo and Rad clinics were impressed at the difference between my extremely minor redness and the considerable burning/blistering that others experienced.  So, give that some thought and ask your Onco team about it.  

    You are getting some great advice and experience from these caring souls at the CSN.  Take advantage of it.  Pay particular attention to mouthcare, throatcare, hydration, nutrition (INSIST ON THE PEG TUBE) and pain control (Mention ROXICET for that PEG tube later on).  Ativan for the rads if you are the slightest bit claustraphobic.  Carefully track/notate calorie intake and liters of water daily, whether by mouth or by PEG.

    God Bless......................hang in there................You'll do fine in time.  JK

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