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Update, All is Well.

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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's picture
CivilMatt
Posts: 2920
Joined: May 2012

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's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

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's picture
Duggie88
Posts: 535
Joined: Feb 2010

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's picture
spector551
Posts: 109
Joined: Nov 2013

That all sounds like good news to me!

 

God Bless,

 

Jamie

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Laughing

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