new to radiation : severe mucositis at only 1800 rads ?

Hi,

I have a lower tongue cancer, T2 N2, fully differentiated. Primary tumor was
3cm. at time of diagnosis, with lymph node involvement on the left side. I
have had two courses of 4 days of chemo with (via IV) CISPlatin, 5-FU,
Taxotere. Now have lymph node involvement on the right side as well
(appearing two weeks after the second course of chemo). The chemo was given
with the usual anti-emetics and steroids by injection into IV.

Six weeks before starting radiation I had most of my teeth pulled out on the
suggestion of my primary Oncologist and a consulting dental surgeon.

Now I am having 200 rads a day via linear accellerator over my whole neck
and throat area. I have completed 9 of 25 planned sessions.

Beginning about the seventh radiation session I developed extreme pain while
swallowing, further absolute loss of all sense of taste (even water now
tastes "oily" and "salty"). At this point I have "extreme mucositis" and
great pain in swallowing. All my mouth feels as if it is coated in some kind
of layer of "slime." When I swallow it feels like some kind of very "dry"
area gets hit which is most painful.

I have, for the oral side-effects been prescribed : Miracid (form of
Omperazole, anti-acid); Dexasone (steroidal anti-inflammatory ?). Also have
on hand some very weird Xylocaine in some kind of gummy formulation that I
can use to "numb" my mouth.

My body is telling me to stop eating (and drinking) which I feel would be
very foolish to do at this point. I am about to begin weekly 4-5 hour chemo
sessions via IV with CarboPlatin.

Really appreciate hearing from anyone with suggestions about dealing with
the mucositis and pain swallowing.

What worries me is : if the symptoms are this intense after only 9 200-rad
sessions, what is my throat going to be like after 25 ?

thanks ! Sally

Uncle Sally wrote:

> I have a lower tongue cancer, T2 N2, fully differentiated. Primary tumor was
> 3cm. at time of diagnosis, with lymph node involvement on the left side. I
> have had two courses of 4 days of chemo with (via IV) CISPlatin, 5-FU,
> Taxotere. Now have lymph node involvement on the right side as well
> (appearing two weeks after the second course of chemo). The chemo was given
> with the usual anti-emetics and steroids by injection into IV.
>
> Six weeks before starting radiation I had most of my teeth pulled out on the
> suggestion of my primary Oncologist and a consulting dental surgeon.
>
> Now I am having 200 rads a day via linear accellerator over my whole neck
> and throat area. I have completed 9 of 25 planned sessions.
>
> Beginning about the seventh radiation session I developed extreme pain while
> swallowing, further absolute loss of all sense of taste (even water now
> tastes "oily" and "salty"). At this point I have "extreme mucositis" and
> great pain in swallowing. All my mouth feels as if it is coated in some kind
> of layer of "slime." When I swallow it feels like some kind of very "dry"
> area gets hit which is most painful.
>
> I have, for the oral side-effects been prescribed : Miracid (form of
> Omperazole, anti-acid); Dexasone (steroidal anti-inflammatory ?). Also have
> on hand some very weird Xylocaine in some kind of gummy formulation that I
> can use to "numb" my mouth.
>
> My body is telling me to stop eating (and drinking) which I feel would be
> very foolish to do at this point. I am about to begin weekly 4-5 hour chemo
> sessions via IV with CarboPlatin.
>
> Really appreciate hearing from anyone with suggestions about dealing with
> the mucositis and pain swallowing.
>
> What worries me is : if the symptoms are this intense after only 9 200-rad
> sessions, what is my throat going to be like after 25 ?
>
> thanks ! Sally

Hello Sally and welcome,
I'm sorry to hear about your cancer and the troubles.
Janet had tongue cancer but no lymph node involvement.
She only had RT and it was really rough.

I just posted various "cares" for treatments (compiled from various cancer
patients.
The one that Steph recommends is
Steph's mix (for pain)
"liquid mixture of nystatin, viscous xylocaine and an anti-inflammatory "
(swish, gargle and/or swallow)
If they don't mix it, ask them for prescription and find a compounding pharmacy.

The swish and swallow might wash the paste away, so you'll have to work out what
works for what situation/time of the day or night.

At least 3 people had a (feeding) port put in. Did they not do that for you?

Janet recommeds going to a major centre like MD Anderson for excellent treatment
and aftercare.
She and hubby lived nearby, while under treatment, returning home for short
visits.
She was made a protective stent by a dental oncologist.
And was given special exercises to do.


Perhaps you'll hear from other head and neck cancer patients.
Post questions, one at a time, if necessary.

Unfortunately Steph's not here to tell us whether the regimen you're on is too
"aggressive" for your type and stage...he currently specializes in head and neck
cancers, but is away for a while.

Are you being treated at a major cancer centre and did you see a dental
oncologist first?

There's also the ACOR list http://www.acor.org/mlists/mlists.html#h
Click on and join Head and Neck Onc.
They probably have lists of foods and how to care for a feeding tube and lots of
other tips to share with you.
Post anytime.
I'll be watching and caring.
J

J wrote :

"Hello Sally and welcome, I'm sorry to hear about your cancer and the
troubles. Janet had tongue cancer but no lymph node involvement. She only
had RT and it was really rough."

Thanks very much, J., for your kind welcome !

"I just posted various "cares" for treatments (compiled from various cancer
patients. The one that Steph recommends is Steph's mix (for pain) "liquid
mixture of nystatin, viscous xylocaine and an anti-inflammatory " (swish,
gargle and/or swallow) If they don't mix it, ask them for prescription and
find a compounding pharmacy."

I will follow up on this, thanks. I will study the posts on this group to
see if I can determine what the anti-inflammatory ingredient is.

"Are you being treated at a major cancer centre and did you see a dental
oncologist first ?"

I'm in northern Thailand being treated by the number one oncologist
(American trained and board certified) in Thailand. Never heard of a dental
oncologist, but my dental surgeon (also a Professor at the medical school
here) consulted closely with my oncologist.

"There's also the ACOR list http://www.acor.org/mlists/mlists.html#h
Click on and join Head and Neck Onc."

The acor.org server seems to be down right now from where I am : I'll keep
trying.

"I'll be watching and caring."

Most kind, and most appreciated !

Sally

p.s. I am a caucasian male, 63 years old, non-drinker, non-smoker, no drugs,
for a lifetime. Usually strong and fit. I have, however, eaten enough very
spicy Thai food with gusto in the last nine years here to really miss
anything tasting like anything

Uncle Sally wrote:

> I'm in northern Thailand being treated by the number one oncologist
> (American trained and board certified) in Thailand. Never heard of a dental
> oncologist, but my dental surgeon (also a Professor at the medical school
> here) consulted closely with my oncologist.
>
> "There's also the ACOR list http://www.acor.org/mlists/mlists.html#h
> Click on and join Head and Neck Onc."
>
> The acor.org server seems to be down right now from where I am : I'll keep
> trying.
>
> Sally
>
> p.s. I am a caucasian male, 63 years old, non-drinker, non-smoker, no drugs,
> for a lifetime. Usually strong and fit. I have, however, eaten enough very
> spicy Thai food with gusto in the last nine years here to really miss
> anything tasting like anything

Hello Sally,
No wonder you have "uncle" in your posting email address. You're a male.

If that's munged email address, you need to be aware that there's a band called
unclesally at unclesally.com, so the part after the @ should be something
different than what you've munged.
They're a cover rock band they cover "everything but the naughty parts" It
might be okay to not change your email address, but I hear that posting to
newsgroups can cause unecessary (email) traffic to a valid web page. I'll leave
it up to you.

I don't know if you tried to subscribe to ACOR and got an error or could not
access the link I posted.
If the latter, try http://www.acor.org/ then click on "mailing lists", then "H"
for head and neck and then see if you can access it and join. If you've already
joined, please ignore me.

Thank you for answering my questions. Thai food sounds delicious. I've never had
any.
I imagine you'll be bored with a bland diet for a while.

I'll let you catch up on posts and get to know the situations of others here.
And get "joined" to ACOR.
Janet might drop by to say hello to you.
I do hope you will keep in touch and let us know how it's going.
Best,
J

Uncle Sally wrote:

> p.s. I am a caucasian male, 63 years old, non-drinker, non-smoker, no drugs,
> for a lifetime. Usually strong and fit. I have, however, eaten enough very
> spicy Thai food with gusto in the last nine years here to really miss
> anything tasting like anything

I forgot, Uncle Sally,
If you're plagued by thick mucous try club soda.
Some can't drink it because the fizzy hurts their throat or it's too cold.
If so, try some room temperature or not as cold.
Some drink it, some swish it and spit.
Steph says it's the best for thick mucous which makes a person "chokey".

Hope this helps.
J

Uncle Sally wrote:
> Hi,
>
> I have a lower tongue cancer, T2 N2, fully differentiated. Primary tumor was
> 3cm. at time of diagnosis, with lymph node involvement on the left side. I
> have had two courses of 4 days of chemo with (via IV) CISPlatin, 5-FU,
> Taxotere. Now have lymph node involvement on the right side as well
> (appearing two weeks after the second course of chemo). The chemo was given
> with the usual anti-emetics and steroids by injection into IV.
>
> Six weeks before starting radiation I had most of my teeth pulled out on the
> suggestion of my primary Oncologist and a consulting dental surgeon.
>
> Now I am having 200 rads a day via linear accellerator over my whole neck
> and throat area. I have completed 9 of 25 planned sessions.
>
> Beginning about the seventh radiation session I developed extreme pain while
> swallowing, further absolute loss of all sense of taste (even water now
> tastes "oily" and "salty"). At this point I have "extreme mucositis" and
> great pain in swallowing. All my mouth feels as if it is coated in some kind
> of layer of "slime." When I swallow it feels like some kind of very "dry"
> area gets hit which is most painful.
>
> I have, for the oral side-effects been prescribed : Miracid (form of
> Omperazole, anti-acid); Dexasone (steroidal anti-inflammatory ?). Also have
> on hand some very weird Xylocaine in some kind of gummy formulation that I
> can use to "numb" my mouth.
>
> My body is telling me to stop eating (and drinking) which I feel would be
> very foolish to do at this point. I am about to begin weekly 4-5 hour chemo
> sessions via IV with CarboPlatin.
>
> Really appreciate hearing from anyone with suggestions about dealing with
> the mucositis and pain swallowing.
>
> What worries me is : if the symptoms are this intense after only 9 200-rad
> sessions, what is my throat going to be like after 25 ?
>
> thanks ! Sally
>
>
Hi Uncle Sally,

J mentioned my name. I'm 6 months out of 30 radiation treatments for
tongue cancer. My tumor was on the left side of my tongue. They removed
it along with half of my tongue then did the radiation therapy to make
sure there weren't any microscopic cancer cells floating around. The
radiation was a nightmare but so far it's worked and there is no
evidence of disease.

First, DO join the ACOR list serve. Lots of helpful folks there. The
usual one or two know-it-alls, but mostly great information and support.

Don't rinse with club soda. Too many H&N radiation people can't stand
the bubbles. I still can't stand anything carbonated. Use a rinse of a
quart of warm water with a tablespoon of baking soda after meals and at
least 4 other times a day. If you are experiencing thick mucus, add a
half teaspoon of salt to the mixture.

I hope you have a huge jar of Aquaphor to put on your neck after the
rads. WalMart has the big jars and they are the cheapest. You need to be
very attentive to your skin as it will get burned and will hurt like
hell. There are some prescription creams that your RO can prescribe like
Biofene, which is wonderful on the burns. After the rads you might want
to find a wound care nurse. They have a gel material called Cool Gel
that you put over a ton of Aquaphor and it gets rid of the peeling,
weeping skin like a miracle.

If water tastes vile, your taste buds are still alive. They get weird
before they die. After a few more treatments you won't taste anything.
The desire to eat flees. You need to talk to your team about a feeding
tube. NOW!! don't wait until it's too late and you've lost too much
weight. I chickened out of the tube and rued the decision for months. I
lived on water and High-protein Boost. The Boost, at room temperature,
went down smoothly and didn't hurt. People will give you recipes for
smoothies and suggest milk shakes. Thank them for their concern. You
won't want them as the cold will hurt and you won't taste them anyway.
The nutritionist suggested the high-protein because tissue generation
needs a lot of protein. You will be drinking it for months. Sam's Club
has the best prices on cases of it. You will drink lots of water because
your mouth will become very dry. Some people found good results from
Oasis dry mouth products, but during treatment, water was the only thing
that worked for me. The dry mouth products do work after the treatments
are done and you have healed a little.

It took me 2 months for any taste to come back. When it did, I was able
to discern the difference between chocolate and vanilla Boost, but not
the actual flavors. Over the next few months flavors and tastes started
coming back. The last one was sweet.

There is hope. Today I can taste everything. I still have issues with
anything carbonated. I can't eat spicy food and I can't deal with hot
temperatures or ice cream unless I let it melt a little. There is still
one sore that won't go away but it's better. I'm eating pretty well and
don't miss the spicy stuff. I do miss Diet Coke but c'est la vie. I
still drink bottled water at room temp. I have a pretty metallic-pink
bottle cover with a handle that had velcro and can be carried on a belt.
Always have water with you.

If you are in really bad pain, ask for meds. When the swish and swallow
was no longer working, they put me on meds for the pain. If you go on
opiates take a lot of senna and stool softeners (sennakot S) I found
that WalMart and Walgreens have the best prices on these. Opiates can
cause bowel problems and you certainly don't need to wind up with a
perforated colon and a poop bag as I did. (Thankfully it was reversed
after 2 months)

Did they give you exercises for your neck? Swallowing? If they did, you
have to do them. At times I needed to medicate in order to do them but
it made my recovery so much easier. If you don't do the exercises now,
there is a chance that side effects can happen even a few years from now.

The lidocaine gel stopped working early on. I couldn't get it all over
my mouth and throat. That's why they gave me the swish and swallow. I
can't remember the name but it was pink and an Rx. I use the lidocaine
gel now everyday. I got dentures to replace the 3 lower teeth they
pulled before the radiation. My gums are still trashed from the rads and
the lidocaine helps to get the dentures on. Once on, they stop hurting.
Save the lidocaine even if you aren't using it.

I took an insulated bag with me to radiation. It held some bottles of
Boost and water, Aquaphor, a one quart plastic bottle with the baking
soda already in it and a book. Immediately after my treatment I want to
the ladies room and applied the Aquaphor. Then I mixed the soda with
water in my bottle and did my rinse.

I kept a chart for the water I was drinking, exercises I had to do,
nutrition, bowel movements, meds, etc. H&N radiation is like a full time
job! The chart helped me to keep track of what I was supposed to be
doing when my brain turned to mush from the meds and rads. I suggest
that you make yourself one, too.

I can't tell you that it will get easier or better. It won't. It will
get worse. The best way to approach it is with knowledge and a
supportive team. I hope you are at a major cancer center. If not, you
might want to consider changing your treatment to one. Most local and
even regional centers don't have the experience to deal with your side
effects. They are unique and H&N cancers are a very small proportion of
what these centers treat.

This is a valid email address so feel free to email me, just put
something in the subject I can relate to so I don't dump it as spam.

I apologize for being blunt.

Janet
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life

Uncle Sally schreef:
>
> The acor.org server seems to be down right now from where I am : I'll keep
> trying.
>
> "I'll be watching and caring."
>
> Most kind, and most appreciated !
>
> Sally
>
Hi Sally,

I hope you'll be able to get access to the ACOR server soon, they really
can help you there with all the questions you have. Janet already gave
you advice on eating/drinking but I didn't read (maybe I missed it) that
in case things get really bad and you are really not able to even drink
the fluid nutrition anymore, there is always the option to get a tube
for liquid food, so you at least get your liquids and nutrition. I hope
that won't be necessary and the tips Janet gave you + the info you will
get in the ACOR group, but it can be reassuring to know the possibility
is there.

Wish you all the best during the treatment and afterwards. I know it's a
hard and painful treatment and hope it'll all be worth it and you'll
have a speedy recovery afterwards.

Anne

Many thanks to J., Janet Wilder, and Starfleet for your welcoming,
thoughtful, and encouraging, responses !

A few specific responses :

1. J. : thanks for pointing out that 'auntsally.com' is a valid name for an
existing website; I've switched now to 'aultAuntSally' which isn't I'm
buying club soda in the next hour

2. Janet : many thanks for the very detailed suggestions, and I personally
experience "bluntness" as something I highly value ! Since the one thing I
don't have access to here is this kind of detailed "after-care" advice, your
comments are invaluable, and I am going to study and experiment with all the
things you suggest. Buying baking soda in the next hour

3. Starfleet : thanks for you kind wishes. For whatever reason the acor.org
sever continues to be unavailable here, and I am sure it is NOT one of the
"rare" sites Thailand has blocked because of porn or "lese Majeste." I am on
medium-high ADSL here, and accessing websites all over the world is not a
problem. The "feeding tube" is a new idea for me, and one that makes me, on
first reaction, want to throw up (:, but knowing it is an option is very
valuable. and I will focus my on-line research on that to make sure I
undrerstand what's involved.

~

The question of "how much weight loss is okay ?" is a very interesting one
to me. I started losing taste just about a year ago, about a month after a
severe accident where I was run down (while on my bicycle) by a drunken
motorcycle rider, breaking my right femur in several places. I assumed then
the loss of taste was related to physical pain, medications, the aftermath
of a big 5 hour surgery that put 500 grams of various metal plates and
screws into my femur, etc. That may have been actually the first sign, I now
realize, with hindsight, of the lower tongue tumor.

In February 2006 my "normal weight" was about 210 pounds, and I was working
out with weights, swimming, or bicycling every day in addition to doing some
yoga and tai chi from time to time.

By April 2006 I was about 200 pounds, by October of 2006, about 195 pounds.
By the time the cancer was discovered, in early December, 2006, I was about
190. After the second chemotherapy during which I basically only took
liquids, I was down to 185 pounds, and now am about 180 pounds on a near
six-foot mesomorphic frame.

It actually feels better to me to be this much lighter (and go from 38 inch
waist to 34 inches), but I am concerned about identifying the point at which
I lose too much protein mass. My mental acuity remains strong, and my
concentration (I am a computer programmer) remains strong.

My basic diet lately has been a "slurry" made from chunk tuna (packaged in
spring water) whipped up with mayonnaise which I can get down, of "soft"
soups, and. sometimes. melted cheese sandwiches on soft bread. Boiled eggs
also whipped into a slurry with mayonnaise. Normally I love to eat the wide
range of exotic Thai fruits, and it's mango season now (the ultimate
aphrodisiacal fruit, imho), but right now all fruits, and tomato, and many
other things all seem to taste very acid and irritate my throat. Sugar and
honey also seem unwelcome to my current ghosts of taste-buds past.

best, Uncle Sally

"Those are my principles : if you don't like them, I've got others."
Groucho Marx

Uncle Sally wrote:

> Many thanks to J., Janet Wilder, and Starfleet for your welcoming,
> thoughtful, and encouraging, responses !
>
> A few specific responses :
>
> 1. J. : thanks for pointing out that 'auntsally.com' is a valid name for an
> existing website; I've switched now to 'aultAuntSally' which isn't I'm
> buying club soda in the next hour

I hope you didn't buy too much (club soda) since Janet said many can't tolerate
the club soda.

Try emailing HEAD-NECK-ONC@LISTSERV.ACOR.ORG (small letters)
with a short introduction and if it works, they'll email you back.
if it doesn't (work) or the email bounces, maybe they're down at this time.
Or maybe Janet can help figure out (how to get you there) by asking on ACOR if
she's in touch with them.

Do look into the port. It's not inserted down the throat.
I think it's called a G-tube or PEG tube.
I don't know if you'll need one or not, because you seem to be eating bread at
this time.
Maybe that varies depending on the area being radiated and the technology used.
You mentioned LINAC.
However, you also mentioned 3 chemos, so you might need the G-tube.

> best, Uncle Sally
>
> "Those are my principles : if you don't like them, I've got others."
> Groucho Marx

Your diet sounds wonderful. I think I'll go eat now.
J

I think it has been a long time since anyone told you how much we
admire you. We followed you through your journey and all the ups and
downs in your personal life throughout it all. You have never stopped
helping people. God Bless You! I wish that there were more like
you....myself included.

J wrote:
> Uncle Sally wrote:
>
>> Many thanks to J., Janet Wilder, and Starfleet for your welcoming,
>> thoughtful, and encouraging, responses !
>>
>> A few specific responses :
>>
>> 1. J. : thanks for pointing out that 'auntsally.com' is a valid name for an
>> existing website; I've switched now to 'aultAuntSally' which isn't I'm
>> buying club soda in the next hour
>
> I hope you didn't buy too much (club soda) since Janet said many can't tolerate
> the club soda.
>
> Try emailing HEAD-NECK-ONC@LISTSERV.ACOR.ORG (small letters)
> with a short introduction and if it works, they'll email you back.
> if it doesn't (work) or the email bounces, maybe they're down at this time.
> Or maybe Janet can help figure out (how to get you there) by asking on ACOR if
> she's in touch with them.

I can't remember how I got there, but when I get the next digest, I'll
look for a subscribe address and post it here.
>
> Do look into the port. It's not inserted down the throat.
> I think it's called a G-tube or PEG tube.

The one I was supposed to get was not down the throat. Last thing a H&N
radiation patient needs is MORE messing with one's throat
> I don't know if you'll need one or not, because you seem to be eating bread at
> this time.

That may stop later on. I was able to eat soft stuff for a while but
there comes a time when nothing can be tasted and everything hurts.

> Maybe that varies depending on the area being radiated and the technology used.

>
> Your diet sounds wonderful. I think I'll go eat now.

....especially the bread part. I'm starting to be able to do little bites
of soft bread with lots of mayo but that's more from having half a
tongue than the rads.

--
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life

"J" <nexsw@nvalid,anon> wrote in message
news:46054FF2.1457B59F@execulink.com...
> Uncle Sally wrote:
>
>> I have a lower tongue cancer, T2 N2, fully differentiated. Primary tumor
>> was
>> 3cm. at time of diagnosis, with lymph node involvement on the left side.
>> I
>> have had two courses of 4 days of chemo with (via IV) CISPlatin, 5-FU,
>> Taxotere. Now have lymph node involvement on the right side as well
>> (appearing two weeks after the second course of chemo). The chemo was
>> given
>> with the usual anti-emetics and steroids by injection into IV.
>>
>> Six weeks before starting radiation I had most of my teeth pulled out on
>> the
>> suggestion of my primary Oncologist and a consulting dental surgeon.
>>
>> Now I am having 200 rads a day via linear accellerator over my whole neck
>> and throat area. I have completed 9 of 25 planned sessions.
>>
>> Beginning about the seventh radiation session I developed extreme pain
>> while
>> swallowing, further absolute loss of all sense of taste (even water now
>> tastes "oily" and "salty"). At this point I have "extreme mucositis" and
>> great pain in swallowing. All my mouth feels as if it is coated in some
>> kind
>> of layer of "slime." When I swallow it feels like some kind of very "dry"
>> area gets hit which is most painful.
>>
>> I have, for the oral side-effects been prescribed : Miracid (form of
>> Omperazole, anti-acid); Dexasone (steroidal anti-inflammatory ?). Also
>> have
>> on hand some very weird Xylocaine in some kind of gummy formulation that
>> I
>> can use to "numb" my mouth.
>>
>> My body is telling me to stop eating (and drinking) which I feel would be
>> very foolish to do at this point. I am about to begin weekly 4-5 hour
>> chemo
>> sessions via IV with CarboPlatin.
>>
>> Really appreciate hearing from anyone with suggestions about dealing with
>> the mucositis and pain swallowing.
>>
>> What worries me is : if the symptoms are this intense after only 9
>> 200-rad
>> sessions, what is my throat going to be like after 25 ?
>>
>> thanks ! Sally
>
> Hello Sally and welcome,
> I'm sorry to hear about your cancer and the troubles.
> Janet had tongue cancer but no lymph node involvement.
> She only had RT and it was really rough.
>
> I just posted various "cares" for treatments (compiled from various cancer
> patients.
> The one that Steph recommends is
> Steph's mix (for pain)
> "liquid mixture of nystatin, viscous xylocaine and an anti-inflammatory "
> (swish, gargle and/or swallow)
> If they don't mix it, ask them for prescription and find a compounding
> pharmacy.
>
> The swish and swallow might wash the paste away, so you'll have to work
> out what
> works for what situation/time of the day or night.
>
> At least 3 people had a (feeding) port put in. Did they not do that for
> you?
>
> Janet recommeds going to a major centre like MD Anderson for excellent
> treatment
> and aftercare.
> She and hubby lived nearby, while under treatment, returning home for
> short
> visits.
> She was made a protective stent by a dental oncologist.
> And was given special exercises to do.
>
>
> Perhaps you'll hear from other head and neck cancer patients.
> Post questions, one at a time, if necessary.
>
> Unfortunately Steph's not here to tell us whether the regimen you're on is
> too
> "aggressive" for your type and stage...he currently specializes in head
> and neck
> cancers, but is away for a while.
>


Combined chemo RT is certainly a standard of care for advanced H&N cancer as
described ( the other standard being hyperfractionated RT)
The mucositis is hitting at the expected time, I think......

Hi,

I was able to, finally, get a membership on Acor H&N cancer ListServ group,
and I am slowly going through the archives harvesting interesting hints,
tips, techniques. Thanks, again, to those who recommended this to me !

Recently in very helpful posts from J. Wilder, J., and others, several
techniques were mentioned which I'm curious about :

1. "swish and swallow" : J. Wilder mentioned this, and my impression is this
is kind of an "idiom" that many people with H&N cancer are familiar with,
but I am not. Is "swish and swallow" referring to the way you eat/swallow
liquid food supplements like Boost ? I assume this doesn't refer to the
rinses people recommend which, to my knowledge, are not swallowed ?

2. I have made up the recommended rinse of baking soda, salt, water : I'm
curious how other H&N patients have experienced this while rinsing and
gargling, and after. Just some comments to help me calibrate my own
experience would be helpful.

3. J. Wilder mentioned "neck exercises" and I am curious if anyone has a
good link about these, or any other personal daily maintenance exercises. I
am experiencing tightening of the jaw muscles (tetany ?), and difficulty
stretching my jaws wide open. I'm not sure at this point if I should "push"
my jaws many times a day to try and retain flexibility (it is painful to do
so), or just accept tightening and not fight it.

4. "Death of taste buds" : J. Wilder used this "image," and I am curious if,
from a clinical and scientific point of view, this is accurate. My intuition
(what's left of it) says that if the taste buds really died, they would not
regain function as J. Wilder goes on to relate happened in her case,
happily.

5. "protein requirements" : I guess ideally I should consult a dietitician
and figure out at what percent of normal body-weight loss I should be
consuming what amount of proteins, carbs, and fats per day. Since I'm now
about 173, 30-35 pounds below my normal average body weight for the last
twenty years, and have a mesomorphic frame on a near six-foot skeleton, I'm
guessing my body fat is now way down, which may not be bad. Since I am
unable to exercise right now, and have a very slow natural metabolic rate,
I'm guessing I should shoot for at least 15-20 grams of protein a day.

6. Vitamins : I've never been a "true believer" in vitamin supplements, but
if anyone has some links to science based studies of basic vitamins like C
and E, minerals like Calcium, Selenium, Zinc, playing a demonstrable role in
palliating or helping with H&N cancer treatments, I'm all ears.

Thanks in advance for your time !

Uncle Sally

"Uncle Sally" <uncleSally@auldUncleSally.com> wrote in message
news:cFoOh.135650$8a4.46328@fe03.news.easynews.com ...
> Hi,
>
> I was able to, finally, get a membership on Acor H&N cancer ListServ
> group,
> and I am slowly going through the archives harvesting interesting hints,
> tips, techniques. Thanks, again, to those who recommended this to me !
>
> Recently in very helpful posts from J. Wilder, J., and others, several
> techniques were mentioned which I'm curious about :
>
> 1. "swish and swallow" : J. Wilder mentioned this, and my impression is
> this
> is kind of an "idiom" that many people with H&N cancer are familiar with,
> but I am not. Is "swish and swallow" referring to the way you eat/swallow
> liquid food supplements like Boost ? I assume this doesn't refer to the
> rinses people recommend which, to my knowledge, are not swallowed ?

It's a medicine. Usually nystatin, an antiinflammatory and an anaesthetic

>
> 2. I have made up the recommended rinse of baking soda, salt, water : I'm
> curious how other H&N patients have experienced this while rinsing and
> gargling, and after. Just some comments to help me calibrate my own
> experience would be helpful.
>
> 3. J. Wilder mentioned "neck exercises" and I am curious if anyone has a
> good link about these, or any other personal daily maintenance exercises.
> I
> am experiencing tightening of the jaw muscles (tetany ?), and difficulty
> stretching my jaws wide open. I'm not sure at this point if I should
> "push"
> my jaws many times a day to try and retain flexibility (it is painful to
> do
> so), or just accept tightening and not fight it.
>
> 4. "Death of taste buds" : J. Wilder used this "image," and I am curious
> if,
> from a clinical and scientific point of view, this is accurate. My
> intuition
> (what's left of it) says that if the taste buds really died, they would
> not
> regain function as J. Wilder goes on to relate happened in her case,
> happily.
>

They depopulate. Most of he cells die, but some survive and then repopulate

> 5. "protein requirements" : I guess ideally I should consult a dietitician
> and figure out at what percent of normal body-weight loss I should be
> consuming what amount of proteins, carbs, and fats per day. Since I'm now
> about 173, 30-35 pounds below my normal average body weight for the last
> twenty years, and have a mesomorphic frame on a near six-foot skeleton,
> I'm
> guessing my body fat is now way down, which may not be bad. Since I am
> unable to exercise right now, and have a very slow natural metabolic rate,
> I'm guessing I should shoot for at least 15-20 grams of protein a day.
>
> 6. Vitamins : I've never been a "true believer" in vitamin supplements,
> but
> if anyone has some links to science based studies of basic vitamins like C
> and E, minerals like Calcium, Selenium, Zinc, playing a demonstrable role
> in
> palliating or helping with H&N cancer treatments, I'm all ears.
>
> Thanks in advance for your time !
>
> Uncle Sally
>
>

Uncle Sally wrote:
> Hi,
>
> I was able to, finally, get a membership on Acor H&N cancer ListServ group,
> and I am slowly going through the archives harvesting interesting hints,
> tips, techniques. Thanks, again, to those who recommended this to me !
>
> Recently in very helpful posts from J. Wilder, J., and others, several
> techniques were mentioned which I'm curious about :
>
> 1. "swish and swallow" : J. Wilder mentioned this, and my impression is this
> is kind of an "idiom" that many people with H&N cancer are familiar with,
> but I am not. Is "swish and swallow" referring to the way you eat/swallow
> liquid food supplements like Boost ? I assume this doesn't refer to the
> rinses people recommend which, to my knowledge, are not swallowed ?

Swish and swallow is how one uses medications to ease the pain of
mucositis and mouth sores. There are various preparations, some even
containing opiates, that you can swish in your mouth to make it stop
hurting. There are other "swishes" that you spit out and don't swallow.
SaliCept and Ulderease are two that you spit out after swishing.
You don't have to swish your nutrition. You just swallow it.

>
> 2. I have made up the recommended rinse of baking soda, salt, water : I'm
> curious how other H&N patients have experienced this while rinsing and
> gargling, and after. Just some comments to help me calibrate my own
> experience would be helpful.

When I did my baking soda rinses I felt better right away. It made the
thick mucus easier to deal with and soothed the mouth pain.
>
> 3. J. Wilder mentioned "neck exercises" and I am curious if anyone has a
> good link about these, or any other personal daily maintenance exercises. I
> am experiencing tightening of the jaw muscles (tetany ?), and difficulty
> stretching my jaws wide open. I'm not sure at this point if I should "push"
> my jaws many times a day to try and retain flexibility (it is painful to do
> so), or just accept tightening and not fight it.

My neck exercises were given to me by my Radiation team. I don't know
where you would find them. Basically they were range of motion
exercises. One of the exercises *was* extending my jaw. Unfortunately I
don't have a copy of the regimen or I'd send it to you.
>
> 4. "Death of taste buds" : J. Wilder used this "image," and I am curious if,
> from a clinical and scientific point of view, this is accurate. My intuition
> (what's left of it) says that if the taste buds really died, they would not
> regain function as J. Wilder goes on to relate happened in her case,
> happily.

Steph answered this. I apologize as I tend to be a bit dramatic and
maybe "death" wasn't the correct word to use. There most probably will
come a time when you will not be able to taste anything. My sense of
smell was also slightly off kilter for several months which also
effected my taste ability as the taste buds regenerated.

> 5. "protein requirements" : I guess ideally I should consult a dietitician
> and figure out at what percent of normal body-weight loss I should be
> consuming what amount of proteins, carbs, and fats per day. Since I'm now
> about 173, 30-35 pounds below my normal average body weight for the last
> twenty years, and have a mesomorphic frame on a near six-foot skeleton, I'm
> guessing my body fat is now way down, which may not be bad. Since I am
> unable to exercise right now, and have a very slow natural metabolic rate,
> I'm guessing I should shoot for at least 15-20 grams of protein a day.

I am really surprised that no one has referred you to a nutritionist.
Your medical team should have done this when your weight dropped so much.

Can you have your RO call MD Anderson and get a copy of their exercises?

Janet


--
Janet Wilder
Bad spelling. Bad punctuation
Good Friends. Good Life

On Wed, 28 Mar 2007 14:55:22 GMT, "Steph" <steph@vancouvers.island>
wrote:
>
>"Uncle Sally" <uncleSally@auldUncleSally.com> wrote in message
>news:cFoOh.135650$8a4.46328@fe03.news.easynews.co m...

>>
>> 4. "Death of taste buds" : J. Wilder used this "image," and I am curious
>> if,
>> from a clinical and scientific point of view, this is accurate. My
>> intuition
>> (what's left of it) says that if the taste buds really died, they would
>> not
>> regain function as J. Wilder goes on to relate happened in her case,
>> happily.
>
>They depopulate. Most of he cells die, but some survive and then repopulate
>
Perhaps that's what happened to me, because I feel that my taste is
largely unaffected after chemoradiation with IMRT. I can for example
taste the various nuances separating different red wines and can enjoy
the taste of really good red wine. I don't really know what the status
of my taste buds was during the chemoradiation, because I had no
appetite, didn't put anything into my mouth, and took all my food and
liquids through the inserted PEG-tube.

My mouth didn't get dry either, perhaps because they were able to save
one salivary gland. I do have some other problems though such as
excessive phlegm formation in the throat and hypersensitivity of the
lower part of the throat to some spices - I can no longer eat hot
chili spiced Thai food for example - it burns the lower part of my
throat and causes incessant coughing. Many other food cause coughing
well, but not as bad as chili.



--
Matti Narkia