Post treatment advise

11B01b57i
11B01b57i Member Posts: 3
in Head and Neck Cancer #1

My husband had surgery the end of July to remove a tumor on the paratid (salivary) gland.  Needle biopsy prior to surgery did not show cancer and confirmed it was a type of tumor that rarely is cancerous.  However, the post surgery path report found cancer.  The tumor had grown around the center main nerve branch feeding the face.  There was nothing in the lymph nodes removed, so all felt it was contained and the best treatment was radiation.  We had 33 radiation treatments with problems from the very beginning.  He was in ER after his 2nd treatment with horrible pain.  Because of the type of cancer and where it was found, they were targeting the nerve pathway.

We have been home since the first of November.  His appetite is back and we have gained ground in regards to eating, weight lose etc, but he seems to still have a lot of pain (gets worse in the evening) and with swelling.  We really weren't told a lot of what to expect except that it takes time and 1 year from his last treatment will be his new norm.  Just wondering of others insight and experience.  I'm thinking that some of the swelling may be fluids that aren't moving well since the lymph glands would have all been effected by radiation.  Sometimes the swelling is very evident and other times it's not.  It appears to move also.  Sometimes up by his ear, sometimes the area of his "double chin" below the jaw line.  His next appointment will be Feb/Mar for his post radiation MRI.

Comments

  • Kyskirt
    Kyskirt Member Posts: 6
    #2
    I have these problems. Get

    I have these problems. Get him into lymphadema therapy asap.  There are also compression garments that he can be fitted for that will help alleviate some of this.  After he learns the proper technique he can perform the therapy himself.  I do this every morning and some days several times throughout the day.  I don't need a compression garment because I handle the lymphadema as it appears.  The pain at night is the result of using his facial muscles and jaw eating/speaking throughout the day.  The muscles are fatiguing faster due to the "trauma" of treatment.  He can get help with physical therapy when the Drs allow it.  Fight for it, don't allow them to tell you give it time to heal.  Scar tissue sets up quickly, fibrosis can set in and he will have to overcome more issues.  Take pain meds and don't live with the pain, depression can really set in fighting chronic pain.  You can't get "addicted" to pain meds when you are experiencing pain, physical dependency will occur but that is normal but it can be handled and professionals know how when he is no longer in pain that requires meds.  Life doesn't have to be so hard. Be proactive and push him to do the same.  He's fought the hard battle and won.  

  • 11B01b57i
    11B01b57i Member Posts: 3
    #3
    Thanks for your response. 

    Thanks for your response.  Unfortunately going anywhere for therepy is pretty difficult.  We're pretty remote.  Had to actually relocate for the radiation because there was no way to commute daily.  However, we will follow up and see what we can do to find out about techniques to use for the lymphodema.  Have a NP that flys into the clinic here every other week.  He was pretty sure part of the pain was due to actually "using" his muscles, but is determined to get back to "doing things".  I'm sure that is a good thing.  We just have to be prepared for the extra pain/fatigue.  Have a retired nurse here too that does exercise classes.  I'm sure he'll try to participate more there as well.  Exercise also helps with the depression.  Even with all the hardships and change we do truly feel blessed.  Things could be so much worse.

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    edited December 2016 #4
    Husband

     

     

    One more thing you will need to watch for is nerve damage. It will not show-up right now but in 4 or 5 years the nerve will die if it got too much radiation. That is one of my many problems the main nerve on the left side of my face is dead and so I lost the ability to swallow or eat and drink anything by mouth. The bad part of this is my doctors said nothing to me about the possibility of this happening.One last thing God bless you for being a caring Caretaker for your husband

     

     

    Tim

     

  • 11B01b57i
    11B01b57i Member Posts: 3
    edited January 2017 #5
    Thanks Tim.  Happy New Year

    Thanks Tim.  Happy New Year blessings to all.

     

  • MemphisTn
    MemphisTn Member Posts: 41
    #6
    Not much but...

    You have to be willing to try all kinds of things to get through this trash. I would suggest sleeping in the most upright position he can handle if he is having problems with the lymph nodes draining, a recliner works well. It does typically get better with time. I found some good lymph drainage message techniques on YouTube, perhaps you could watch some videos, they are fairly easy to do and I found them effective after I practiced a bit. Drink as much water as possible each day. I keep,a glass by my bed each night due to the impaired salivary glands from rads. Keep some various flavors of sugar free throat lozenges (Halls) on hand for bouts of dry mouth where water may not be on hand. Odd but I found coloring helped me relax a lot during treatment and recovery. You can find adult coloring books and colored pencils (Crayola rocks) at Wally World or Walgreens, etc. Also, as much as we don't want to move sometimes, going to the park, walking, daily weights, some cheap dumbbells work perfect, pretty much anything to get the blood flowing, works wonders, helps get the fluids going and imo, helps keep you positive. Youd best check with the dr though first.

    I also had a rare cancer found in the salivary gland, I know it stinks. Heck, we all do, but, imo it's way early for a new normal : ) in fact, I would say, even though miserable at times, if he's eating and tolerating, it's only improvement from here with regard to the affects.

    much love

    -pc 

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