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Lucky or Fooling myself?

ac_scott
Posts: 9
Joined: Nov 2012

Just finished my 8th of 35 rad Tx. I have stage IVa SCC, Lateral Tongue, Floor of Mouth, Mandible and Lymph Nodes. Some of the stories here scare the crap out of me. The "Lump" on the floor of my mouth has all but disappeared, my lymph nodes swelled up like Walnuts after the 1st Tx, but now are almost normal. The only eating problem is because I had to have my 4 lower front teeth removed because of the intrusion into the mandible (I can still eat a Big Mac but only with a knife and fork). I do have "Syrupy" saliva, but a nice hot cup of coffee helps it go away, and dry mouth at night, a sip of water every few hours and it's back to sleep. Looking for the Biotene Gel (I live in the Philippines) to help get a better nights sleep. I've lived in the Philippines for 12 years and since no surgery was required decided to stay here for my Tx since it's only Rad. Cost was another factor, $6,000 before I submit to Tricare for reimbursement, not sure how much they're going to cover.

I guess my question is, am I normal at this stage of my treatment? Are things really going to get as bad as some of the stories I read hear? I know everyone's tolerance is different but I haven't read much about anyone having few complications.

Thanks for any advice, this looks like a good support group for information and just friendly support and advice.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

I guess it depends on what you consider complications...

I was STGIII Tonsils..., had sixtenn weeks of chemo, seven of which were concurrent with rads.

I did lose taste and saliva, and was pretty much on a liquid diet for several weeks.

But my treatment was very manageable, and at no time did I have any thoughts of not continuing or that I couldn't make it...

A few months after treatment, my taste and saliva started very slowly coming back. It took nearly two years to completely return.

Now at over three years and fasy approaching four....all scan have been clean, and all bloodwork is back within normal ranges.

You won't know how it will effect you, until it does... (or doesn't)

Best,
John

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Hi ac_scott,

Welcome

I was also stage IVa, SCC, BOT, HPV+, one lymph node and I had surgery followed by rads and chemo.

This site can scare a new H&N cancer patient. I was afraid I would forget how to swallow and lose so much weight I would have to get fitted for a new mask. Other than the (regular) side effects, i.e. sore throat, sores in mouth, nausea, burned neck, I did pretty well. Parts of the treatment wasn’t a cake walk, but I made it through all right.

You sound normal to me at 8 rad treatments. I would expect food to lose all or almost all appeal (soon). The sore, swollen throat and mouth sores may be just down the road and as a parting gift, you may experience a burned neck (like the worlds worst sun burn) or may be not.

Today, at 7 months and 2 weeks post treatments, I am starting to eat (and enjoy) food again, I am on no serious meds, I sleep good, have a little saliva and have an occasional dry mouth when I wonder to far from my water bottle or Xylemelts.

You are already doing it, cross your fingers and toes and hope for a smooth (remaining) ride.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

You sound to me to be right on track, after 8 rads...by the time they are over, the Big Mac will be a tad dry, so eat as many as you can now. I had 35 rads, too...by the end my mouth was a desert, and I couldn't taste anything...which made drinking Boost and Ensure more doable. Tho I did keep finding things that I could eat and taste slightly (cauliflower and cheese soup was one).

This is the BEST support group on the internet...I came here last March when I was Dx'd, and have been here everyday since...The people you will meet here are supportive, kind, smart, and have answers to questions that the Dr.'s have no clue...practical things that make treatment MORE doable.

If you can order off of Amazon, you can get Biotene Gel there....I could never find it in my little town in Montana....

Glad you decided to join us.

p

katenorwood
Posts: 1851
Joined: May 2012

Hey there !
This is a fantastic site...and you are right some posts sound very intimidating as you go through treatments...but if you stay with us you see the other side of the coin. Most people I started with are through the bad, and now enjoying life ! And every BODY is different, you may not get severe reactions...glad you're with us ! Katie

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hi Scott,
Welcome to our little slice of the internet, sorry you find yourself
hear but you will be sure glad you have. This place is full of support
anf info second to none. Everyone is an individual so all our "side effects"
are simular but effect different people in diferent ways. I was Stage II
tonsil HPV+ and my treatment was 33 rads only, I am now 7 months
out and doing pretty much what I did before I got this crap. My taste
and saliva are still off but coming back slowly ( very slowly ).
Take it one day at a time and soon you will be on the road
to recovery.

God bless
Tonsil dad,

Dan.

Hard12Find
Posts: 208
Joined: Sep 2012

Welcome to the bus ride, not that any of us would want to be here.
I would say you are in an average state of condition for the stage of your treatments, but my advice would be let tomorrow take care of itself, live for the day, make each one the best you can, and come back ready to fight the next day, and you will get through like all of us, one step at a time.
Jim

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

doing "one day at a time" is the only way to get thru this with some peace of mind. Another huge piece of advice I got on this board when I first started was not to fight any battles that weren't right in front of me. (I tend to fight battles that may never happen)...The one day at a time, tho, was a learning curve thing for me, and I got darn good at it...tomorrow will be here soon enough, so just concentrate on today.

p

ac_scott
Posts: 9
Joined: Nov 2012

Thanks for the support and advice.

I know it's "one day at a time". Thats the hard part for me, I'm a planner and hate not being in control. That's the most frustrating part for me, at least with the information I get from all of your experiences, it's easier to formulate Plan B. I just want to get all of this behind me. I have 11 and 5 YO Daughters that I need to see grow up without Daddy suffering. And I'll be damned if I let this get the better of me.

Just curious, what's the cost of Rad Tx in the States? I'm paying about $92 per session here in the Philippines.

phrannie51's picture
phrannie51
Posts: 3777
Joined: Mar 2012

so like I said, one day at a time was a real learning curve for me...but living life that way for the time being made it so much easier.

Rads are way more expensive here....mine ran about $26,000 month...divide that by 30 and you get $866 buckaroos per day in the rad room. I had amifostine to counteract the reaction of my saliva glands...I went everyday to chemo, they'd hydrate me, then give me the shot right before radiation....can you believe it was $2100 EVERY DAY!!

p

Steve1958's picture
Steve1958
Posts: 8
Joined: Oct 2012

I'll echo the "One Day at a Time" idea. When I first went into treatment, it all seemed so overwhelming, and the end just seemed so far away. Everybody I talked to kept telling me to just take it one day at a time, so eventually the message got through, and I just focused on dealing with today's new pains and eating issues and rashes breaking out, and didn't worry about what tomorrow would bring. It made things so much easier to handle, but was not easy getting to that state of mind. I'm now starting my last week of rads, and I can almost touch the end of this. I realize there is still more pain to come as recovery starts, but I only have the pain that I have right now, today. I let God hold tomorrow's pain for me. Just focus on getting through today and it will take some of the burden off.

Best Regards,
Steve.

AJW1966
Posts: 69
Joined: Nov 2012

Well put Steve. Thank you. I have about 2.5 weeks left and it's tough but again.....focus on today and let God handle the rest! : )

AJW1966
Posts: 69
Joined: Nov 2012

Welcome! Like you, i'm fairly new here too. I'm glad i found this site, it's so informative and everyone is very helpful. What i've seen here is no one will steer you wrong.
About me: stage III BOT SSC, HPV+, metastasis to lymph node no primary found. 30 Rads.
#18 coming up with 12 more to follow.

So, when i hit that #8 Rad, tastes started leaving, saliva was slowing down but still able to tolerate a lot. Now, jump to 9 Rads later and i have almost no taste. Many...many foods taste like chalk, paste, dirt. Saliva is almost gone so i drink a lot of water, sugar free hard candy helps.
No one here is going to sugar coat anything so get ready for a major but temporary (key word is *temporary*) change in your life.
It IS manageable. I am able to still enjoy Ensure, Boost, Muscle Milk, Lemonade(sugar free), juice drinks, Ramen Noodle soup and some other stuff.

Now everyone's effects from rads and/or chemo is different so i wouldn't stock up on cases of stuff that in one or two weeks you'll end up despising. Experiment as your tastes change. I buy 6 packs at a time because i don't know if next week i'll hate it.

Also, you mentioned Tricare. Have you contacted them and find out what it would cost if treatments were in the states?
So stick around, lots of good people and info here.
All the best, God Bless!!
Alan

AJW1966
Posts: 69
Joined: Nov 2012

Forgot to add that i too was a coffee drinker. I love...love..love my coffee in the morn.
I can't have it anymore. It's best that you give it up at least until your rad effects start to wear off. Coffee is a diuretic which during Tx you don't need. Your body will need water for hydration and to assist in the repair of damaged cells.
Sorry...just my .02 cents worth : )

Alan

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

All the above sound normal to me. I'm no doctor and you are still in the early stage ....but as you have heard each person responds differently.

My rads were $1200 a session. That's what the bill was for, not sure how much the insurance company actually paid (maybe I will look at the payment sheets one day to figure out who's on first)

I'm a planner like you ...hate to NOT be in control. I too have young kids, ages 2-14 (I started late in life, I'm 49 years old).

You will be around. You just have to get through this and you are good to go. :)

My daughter helped me for a full week at one of my hardest points. She fed me through my tube, got me up to go to my rads and kept me covered and the heat on (I stayed in an RV at the site where I received my treatments). It was hard for me to see her go through that ....but I have to tell you she is one strong girl today and probably matured 2-3 years beyond her age due to that....I like to think she is a better person for all she went thru...but as a father I also hate to think she had that on her shoulders.

Keep us posted.

My dad had tricare (24 year Navy veteran). In fact I lived in the Philippines when from age 4-7 ...in fact I was born outside the continental US as a Navy brat :)

Best,

Tim

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

My treatment was back in 2004. I don't remember how it was broken down but I do remember the figure that BCBS paid out on me that year. Between chemo, radiation, PEG tube, PICC line and a week's stay in the hospital for being rundown, the grand total was (drum roll please), a little over $156,000. Thank GOD for insurance and for my father who impressed upon me the need to have medical insurance no matter what it cost.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Like everyone else - glad you found the site - sorry you needed to.

You sound like a normal H&N patient to me. And you've only got about two months to be concerned about - two months - compared to the hundreds of months you'll have to look forward to. Oh - and I DO realize it's easy for me to say "only two months", since I'm not the one in the middle of treatment. Happily, many of the bad parts are hazy for me now, but I do recall treatment not being anyone's idea of a good time. Hope you are one of the folks who is able to make it through treatment with the fewest problems.

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