Update

corleone · May 2014

Had a scope done by my oncologist on 20-May-2014, during my regular follow-up (done every 4 months, and from now every 6 months). I am at 1 year 9 months post radiation and 1y 6m post last chemo treatment for NPC.

Everything looks OK. No imaging done though (as per Hospital’s policy), so I can’t possibly know if anything’s wrong below the neck (no reasons to believe that).

Otherwise I am doing OK, with the usual side effects:

- Dry mouth. The condition improved, it’s OK during day, but still dry overnight. The dryness no longer wakes me up; (if not bothered by other issues) I can make a full 6-7 hour sleep without waking.

- Taste. A bit off, especially for sweets, but hey, no complains here.

- Hearing loss. That’s the only one going worse, but at a slow pace. That’s my biggest issue right now, especially when I speak over the phone.

- Fatigue. Rarely bothers me, more likely during evenings. Sometimes though it comes out of the blue and I need to rest (nap), if possible. Haven’t checked my thyroid hormones for some time (a year ago normal level).

Besides those, I feel very good. Very rarely depressed, but no biggie, I don’t need any medication (except, maybe Ativan from time to time, when I also get anxious). Pyrosis (heartburn) - bothers me quite often, but it’s easily taken care of with some yogurt +/- some Zantac or similar. I drink lots of water, so I have to use the bathroom more often (an issue when I travel). Teeth are OK, I keep flossing at least once a day; I still use the flour trays, but only 3 times a week or so, and brush after every meal. Weight is normal, no issues whatsoever in this department. I try to exercise every other day, but I have to struggle until I get it started.

Sara1234 · May 2014

Good

Happy to hear things are getting back to Norm ..............I have meniers so that kinda suks with the hearing loss do you have tinitus ..at least you are excersising sounds like things are getting back to norm ......................................

Sara1234 · May 2014

Sara1234 said:
Good
Happy to hear things are getting back to Norm ..............I have meniers so that kinda suks with the hearing loss do you have tinitus ..at least you are excersising sounds like things are getting back to norm ......................................

what are flour trays

Not sure what that is

corleone · May 2014

Sara1234 said:
what are flour trays
Not sure what that is

Hi Sara

Yes, I have tinnitus, but I got used to it, I no longer notice it unless I think about it (or when I am in a very quiet environment). Fluor trays, these are actually Custom Fluoride Carriers; I use these to pour some fluoride gel, keep it for about 5-10 minutes, and no drink/rinse for 1 hour. Helps with preventing tooth decay.

Duggie88 · May 2014

Good News

You will continue to see changes. I am over 4 years out and I am still changing, I was just told today that my voice is still getting better. I use to have a deep Barry White voice and after surgery and radiation it sounded like I was using a touch of helium. My point being, they told me that whatever I didn't back in a year I most likely may be gone forever.

I just love proving people wrong.

Heal on.

Jeff

debbiejeanne · May 2014

carleone, it sounds like you

carleone, it sounds like you are doing pretty well. glad the side effects are small and few. great news about the teeth as they can be a real problem. glad you get to go to doc every 6 months instead of 4, that shows improvement and that the doc has faith in your healing. praying you continue to move forward and live life. thanks for the update. its always good to hear when someone is doing well.

dj

phrannie51 · May 2014

WTG Corleone!!

We could be writing the same story with NPC.....we started together, and are both at 1 year, 9 months out.....tho I don't have any hearing loss that I can notice, I still have that persistent ringing in the ears.....and like you have gotten used to it.

Sounds like you've done a great job of coming back to your normal (abi-normal, really) self. Glad to hear things are good.

p

CivilMatt · May 2014

Duggie88 said:
Good News
You will continue to see changes. I am over 4 years out and I am still changing, I was just told today that my voice is still getting better. I use to have a deep Barry White voice and after surgery and radiation it sounded like I was using a touch of helium. My point being, they told me that whatever I didn't back in a year I most likely may be gone forever.

I just love proving people wrong.

Heal on.

Jeff

little high

Jeff,

Maybe your shorts are too tight?

Just saying,

Matt

CivilMatt · May 2014

update

Corleone,

Congratulations on your good onc visit. Your conditions sound par for the H&N course, taste, dry mouth, fatigue, etc. Improvements are definitely a slow process, but things do get better.

You are headed in the right direction.

Matt

Guzzle · May 2014

CivilMatt said:
update

Corleone,

Congratulations on your good onc visit. Your conditions sound par for the H&N course, taste, dry mouth, fatigue, etc. Improvements are definitely a slow process, but things do get better.

You are headed in the right direction.

Matt

Delighted

You are doing so well. It gives hope to those of us in treatment. I knew it was tough but it turned Jeff from Barry White into Barry Manilow!. Work that one out! G.

hwt · May 2014

Guzzle said:
Delighted
You are doing so well. It gives hope to those of us in treatment. I knew it was tough but it turned Jeff from Barry White into Barry Manilow!. Work that one out! G.

Corleone

Sounds like you are moving forward very well. I have a bit of trouble hearing on the phone too but nothing the speaker button doesn't resolve. Two years post, I am still seeing improvements. Had my first Pepsi recently and it sure was good :-)

nick770 · May 2014

thanks for sharing your

thanks for sharing your updates.

keep up the fight

patricke · May 2014

UPDATE

Hey Corleone,

I'm glad to hear that life is improving for you overall, and best of all, that your last exam report was NED, that's great. Are you using a mouth moisturizing spray like Mouthkote, or Biotiene? Mouthkote was one of my bestest, dependable friends for years until my saliva magically returned in 6/11.

I do have one concern though, and that is, since you are a year, six months post treatment, I would think that you would be getting periodic (every 6 months or at least annually) eyes to thighs PET/CT scans (gold standard), which I would also think should be determined by your doc, not hospital policy. It might be worth chatting with your doc about it; I'm just say'in, it wouldn't hurt to ask.

It sounds like life is gradually, ever so gradually getting to a new normal for you; it takes time, so keep hanging in there and keep it mov'in forward.

PATRICK

wmc · May 2014

Glad you're doing good.

Love to hear.....N E D

Glad you check up was good and you seem to be on top of all the rest.

wmc

corleone · May 2014

patricke said:
UPDATE
Hey Corleone,

I'm glad to hear that life is improving for you overall, and best of all, that your last exam report was NED, that's great. Are you using a mouth moisturizing spray like Mouthkote, or Biotiene? Mouthkote was one of my bestest, dependable friends for years until my saliva magically returned in 6/11.

I do have one concern though, and that is, since you are a year, six months post treatment, I would think that you would be getting periodic (every 6 months or at least annually) eyes to thighs PET/CT scans (gold standard), which I would also think should be determined by your doc, not hospital policy. It might be worth chatting with your doc about it; I'm just say'in, it wouldn't hurt to ask.

It sounds like life is gradually, ever so gradually getting to a new normal for you; it takes time, so keep hanging in there and keep it mov'in forward.

PATRICK

Hi Patrick

I am using Bioten solution, to rinse my mouth from time to time. I am also using a salt and bicarbonate solution for mouth or nasal rinse.

I agree with you on the PET/CT scan; it’s a bit more complicated though, the request for that would have to come from my GP (sounds illogical, but that’s what it is). The oncologist wouldn’t request it, unless there are symptoms.

patricke · May 2014

corleone said:
Hi Patrick
I am using Bioten solution, to rinse my mouth from time to time. I am also using a salt and bicarbonate solution for mouth or nasal rinse.

I agree with you on the PET/CT scan; it’s a bit more complicated though, the request for that would have to come from my GP (sounds illogical, but that’s what it is). The oncologist wouldn’t request it, unless there are symptoms.

ONE MORE THING

Hey Corleone,

Just one more thing about the PET/CT scan. My wife, Diane, reminded me, when she read this, that one of the big reasons, which is of course obvious, for the periodic scans is to catch any meatastacism to other body parts, like the lungs, as early as possible, before symptoms appear. I realize that your not recieving them has to do with the insurance company policies (at least that is what I am guessing), but I thought that I would nudge the issue a little more anyway. Even a bit more discussion with your oncologist might be worthwhile to learn about the basis of his/her choosing to wait for symptoms to appear before ordering a scan. You may not have any recourse, but if there is any way that you can find someone to discuss this matter with who may have some influence, or clout (your insurance company clinical cancer specialist division supervisor perhaps, or maybe your state insurance commissioner) to make a change it would be worth the time and effort. Again, I'm just say'in, who knows, you might get someone to listen and act on your behalf.

Diane also wants me to encourage you to have your thyroid checked, as low energy may be a symptom of hypothyroidism. My thyroid was peachy until after my beloved rads had their way with it; now I too am taking a Synthroid tablet every morning along with my multivitimin, like apparently most of the other adults in the US. It never hurts to check.

In regard to the ever popular dry mouth, you might want to experiment with keeping a small bottle of spray Bioten or Mouth Kote with you to help combat the desert spells when you are out and about. I always had one in my pocket, and one stashed in my my car, because I would be just fine for awhile, and then, oh, time for a dry spell. Have A Great Weekend!

PATRICK

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