Update, All is Well.

Ruben and Jude
Ruben and Jude Member Posts: 155
in Head and Neck Cancer #1

Hi, just wanted to check in with an update and good positive news.

Ruben completed treatment in June, (tonsillectomy, G-tube placemnt, 35 rads, 3 concurrent chemo's) and was declared NED approx. 6 weeks later.

Progress has been slow, but pretty much steady. Stamina is low, but improving; he's starting to eat with the help of Megace, but the majority of his nourishment is from he tube; wt. is down 50 lbs, but we 'fattened' him up before treatment (plus he was overweight to begin with), so all is well there; his swallowing is intact; taste buds are sparking at about 50%,  food tastes like cardboard... mostly due to the lack of saliva; saliva is about 25%; no nausea; no sore throat; occassional sore pops up on his tongue, but is managed by a trouch or chloraseptic spray; no teeth issues to date, which is a concern, so he's faithful with flossing, using Biotene products and drinking water; his throat has some 'radiation' changes that look similar to the puffiness on the inside of his cheeks, which coincided with the return of his sleep apnea; I notice he is not a sharp as he was before treatment, but I'm attributing most of this change to lack of proper nourishment and sleep (I'm aware of 'chemo' brain, which is also a possibility), but he's more alert when he does receive enough sleep (due to a V-pap machine) and the proper amount of nourishment.

There you have it in a nutshell from a huge tree! Jamie wrote a beautiful prayer I hope most of you have read. We are not alone, we have eachother, and best of all, we have a loving God who cares.

Take care my friends. God Bless.

Big heartfelt hugs.

(Ruben and) Jude

Comments

  • j4mie
    j4mie Member Posts: 218
    #2
    Nice to hear from you!

    Jude,

    I'm happy to hear that Rueben is making steady gains! Remember, slow and steady wins the race Wink Hopefully the tastebuds will perk up again soon. 

    Take care,

    Jamie

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    Good report!

    Ruben & Jude,

    I am glad to hear Ruben is doing better and healing right along.  With taste buds sparking at 50% I would expect him to be eating soon.   For me it was the aversion to the feel of most foods (what did you say about radiation brain)?

    Keep NED in the head and moving forward.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    jude, i'm so glad ruben

    jude, i'm so glad ruben isdoing well.  lack of proper nourishment and sleep will definitely take a toll on the mind.  hopefuly, once he's better in those areas, the chemo brain w/b better also.

    just for the record, i really believe there is radiation brain.  i didn't have chemo but i definitely have/had chemo (radiation) brain.  Embarassed

     

    God bless,

    dj

     

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #5
    Jude

    Glad to hear Rubin is doing well. Taking time to heal is a great thing. I stopped using my Cpap and evenb had the doc make note on my CDL medical card that I no longer have sleep apnia due to cancer surgery.

    Take care

          Jeff

  • spector551
    spector551 Member Posts: 109
    #6
    Duggie88 said:

    Jude

    Glad to hear Rubin is doing well. Taking time to heal is a great thing. I stopped using my Cpap and evenb had the doc make note on my CDL medical card that I no longer have sleep apnia due to cancer surgery.

    Take care

          Jeff

    That all sounds like good

    That all sounds like good news to me!

     

    God Bless,

     

    Jamie

  • Ruben and Jude
    Ruben and Jude Member Posts: 155
    #7
    (No subject)

    Laughing

Discussion Boards