Im New, I had tongue cancer

Hello!

Ive been looking for a place to share my cancer experience. This place
seems to fit the bill.

I found a lump near the front of my tongue about 5 months ago. I thought
about cancer,b ut that happens to "other people" right? Well, it
happened to me.

I had close to half of the tongue removed and 17 lymphnodes extracted.
They say that the nodes are clean! And the doctor thinks he got it all,
but im still scared. I cant even imagine going thu rad for my mouth. It
sounds painful. I smoked for 28 years and believe that was the cause,
but i am struggling with not smoking too. I Know i have to quit----im
fresh outta surgery---only two weeks!

I feel lucky, but im very scared it may come back or that they didnt get
it all. Yet they said everything looks great!

I cant talk well, and i cant eat well and i drool alot! LOL

well thats my story. i think im outta the water, but fear still creeps
up.


candy

Candace Slice wrote:
> Hello!
>
> Ive been looking for a place to share my cancer experience. This place
> seems to fit the bill.
>
> I found a lump near the front of my tongue about 5 months ago. I thought
> about cancer,b ut that happens to "other people" right? Well, it
> happened to me.
>
> I had close to half of the tongue removed and 17 lymphnodes extracted.
> They say that the nodes are clean! And the doctor thinks he got it all,
> but im still scared. I cant even imagine going thu rad for my mouth. It
> sounds painful. I smoked for 28 years and believe that was the cause,
> but i am struggling with not smoking too. I Know i have to quit----im
> fresh outta surgery---only two weeks!
>
> I feel lucky, but im very scared it may come back or that they didnt get
> it all. Yet they said everything looks great!
>
> I cant talk well, and i cant eat well and i drool alot! LOL
>
> well thats my story. i think im outta the water, but fear still creeps
> up.
>
>
> candy
>
>
Hi Candy,

I had the left half of my tongue removed in June due to squamous cell
cancer. It's a painful thing and you have my sympathy and understanding.
I did not have any neck surgery probably because it was thought that the
tumor was smaller than it actually was, but there are some doctors who
don't believe in neck resections unless it's found that the nodes are
effected.

There is a list serve at ACOR for Head & Neck cancer patients and I
strongly suggest that you join that group. There are some very well
informed people there who are helpful and some others, like myself, who
have been there and done that and try to help.

You have every right to be frightened. Cancer is scary. I'm frightened, too.

My doctor felt that I needed radiation therapy due to the size of my
tumor. There was no evidence of cancer and he assured me that he felt
that he got it all, but they worried about a microscopic cell floating
around some where so they suggested I undergo radiation. I had 30 IMRT
radiation treatments at MD Anderson Cancer Center in Houston, TX and it
was a nightmare. You didn't say that you had to undergo radiation, so if
you don't you are lucky.

Has your surgeon done anything about sending you for speech therapy? My
cousin's wife is a speech therapist and she told me that there are
special therapies for hemi-glossectomy patients. I'm lucky in that I
just lisp and most of my speech is still intelligible, though I am
self-conscious about my lost articulation. I was a public speaker and
now I'm too insecure to speak in front of large groups. If I talk a lot,
I drool, too.

Do join the ACOR H&N list serve. There are other tongue cancer patients
there. While this group is wonderful for support and knowledge, it's
something else to be in a group where people have gone through what you
have gone through or about to go through.

Good luck and stay well.
Janet

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

"Candace Slice" <candysliced@webtv.net> wrote in message
news:9514-46240C66-1095@storefull-3137.bay.webtv.net...
> Hello!
>
> Ive been looking for a place to share my cancer experience. This place
> seems to fit the bill.
>
> I found a lump near the front of my tongue about 5 months ago. I thought
> about cancer,b ut that happens to "other people" right? Well, it
> happened to me.
>
> I had close to half of the tongue removed and 17 lymphnodes extracted.
> They say that the nodes are clean! And the doctor thinks he got it all,
> but im still scared. I cant even imagine going thu rad for my mouth. It
> sounds painful. I smoked for 28 years and believe that was the cause,
> but i am struggling with not smoking too. I Know i have to quit----im
> fresh outta surgery---only two weeks!
>
> I feel lucky, but im very scared it may come back or that they didnt get
> it all. Yet they said everything looks great!
>
> I cant talk well, and i cant eat well and i drool alot! LOL
>
> well thats my story. i think im outta the water, but fear still creeps
> up.
>
>
> candy
>
Hi Candy,
I just started chemo today for squamous cell carcinoma at the base of the
tongue.
After several courses of this I go to radiation and then possibly surgery.
Not to bad after the 1st day, a little shakey and tired, that's all.
They told me to expect considerable hair loss over the next two weeks.
Good luck to you Candy,
Peter

Thank you Janet for responding! I have to go to my onocologist and i
think from there we will see if ill need Rad. Im very frightend of rad
because it burns the mouth. But i have to trust the doctors know what
they are doing.

They think they got it all.....i PRAY theyre right!

Hi Peter, i see you have joined the club! Im sorry for you, but your
posts make you seem fearless! I met a guy that had a severe case of
tongue cancer and he had chemo, rad and surgery. Hes walking around. The
cancer is gone! There is hope! He did say it was difficult tho....but
any cancer treatment is hard! Best of luck to you!

Candace wrote :

"Ive been looking for a place to share my cancer experience. This place
seems to fit the bill.

I found a lump near the front of my tongue about 5 months ago. I thought
about cancer,b ut that happens to "other people" right? Well, it happened to
me.

I had close to half of the tongue removed and 17 lymphnodes extracted. They
say that the nodes are clean! And the doctor thinks he got it all, but im
still scared. I cant even imagine going thu rad for my mouth. It sounds
painful. I smoked for 28 years and believe that was the cause, but i am
struggling with not smoking too. I Know i have to quit----im fresh outta
surgery---only two weeks!

I feel lucky, but im very scared it may come back or that they didnt get it
all. Yet they said everything looks great!

I cant talk well, and i cant eat well and i drool alot! LOL

well thats my story. i think im outta the water, but fear still creeps up."

Dear Candace,

Welcome to this group ! If you view the message I just sent to Peter,
you'll find details on my tongue cancer and my treatments. My tumor is in
the base of my tongue, and I am told that tumors there are quite different
from tumors of the front part of the tongue.

Highly recommend you read the many posts of J. and Janet Wilder : imho, full
of wise and caring words, and good information.

I'd like to reassure you that radiation is painless in itself, but the side
effects are what you will have to deal with. I see Janet has already written
you, and told you about the ACOR mailing list, and, as I wrote to Peter, you
can read Janet's previous posts and get a great recipe for a cheap and
easy-to-make mouth-rinse using baking soda (bicarbonate of soda). imlho that
rinse can really make a difference if you get severe mucositis from the
radiation therapy.

I'm scared too ! Hair loss hasn't bothered me, weight loss up to a point
was kind of 'liberating' (like so many 60 something males I had about 15
pounds that really 'deserved' to go away). The loss of taste and appetite
has been disturbing; I sometimes say to my friends : "food and I are
divorced" And in my case the loss of vocal power has really put a cramp
on my singing and story-telling activities which have been an important part
of my creative life.

Hope you find this group a warm and supportive place to share your
experiences.

best, Uncle Sally

Candace Slice wrote:

> Ive been looking for a place to share my cancer experience. This place
> seems to fit the bill.
>
> I found a lump near the front of my tongue about 5 months ago. I thought
> about cancer,b ut that happens to "other people" right? Well, it
> happened to me.
>
> I had close to half of the tongue removed and 17 lymphnodes extracted.
> They say that the nodes are clean! And the doctor thinks he got it all,
> but im still scared. I cant even imagine going thu rad for my mouth. It
> sounds painful. I smoked for 28 years and believe that was the cause,
> but i am struggling with not smoking too. I Know i have to quit----im
> fresh outta surgery---only two weeks!
>
> I feel lucky, but im very scared it may come back or that they didnt get
> it all. Yet they said everything looks great!
>
> I cant talk well, and i cant eat well and i drool alot! LOL

Hello candy and welcome to alt.support.cancer
You'll find many head and neck people here who've bravely fought the battle.

If lymph nodes were positive and/or not enough margin (see your pathology
report and/or surgeon's report), it's probably best to have radiation
therapy, combined with chemo if the lymph nodes were positive. It's your
best shot at not having a recurrence. It can be a tough road depending on
several factors. The size and degree of invasion. The technology used and
the number of patients the treaters see each year. So if you're not going to
a major cancer centre, you may wish to look into it.
They usually have a team of people to help you through your treatments.
They'll checkyou first to make sure you are healthy enough for the
treatments.
Janet did it by using their RV, since the treating center was further away
from where she lived.

Janet mentioned the ACOR list. All the head and neck people join that
private list as well.
You'll have a bigger team of supporters and lots of good tips as to what not
to do and what to, while under treatment. By clicking here
http://www.acor.org/mlists/mlists.html
select H, then click on the list name, then "join". They will email you that
your message has been received. If you don't hear back within 24 hours,
send on email to the email address at the top of that page. This could keep
you busy for a while.

I hope you'll keep us updated, from time to time, on how it's going.
Best wishes,
J
PS When I tell people here to "ignore a topic" or "don't reply to a poster",
please pay attention.
Some people sometimes crosspost (from other groups) here.
There's also some people who post "make money" webpages here. Please ignore
them, especially the ones with "blog" in the pages. They're getting pesky
here.

On Mon, 16 Apr 2007 19:53:10 -0400, candysliced@webtv.net (Candace
Slice) wrote:

>Hello!
>
>Ive been looking for a place to share my cancer experience. This place
>seems to fit the bill.
>
>I found a lump near the front of my tongue about 5 months ago. I thought
>about cancer,b ut that happens to "other people" right? Well, it
>happened to me.
>
I'm sorry that you have to be here, but welcome! I was diagnosed with
tonsil/base of the tongue cancer with a huge lymph node metastasis on
the neck in 1988.

>I had close to half of the tongue removed and 17 lymphnodes extracted.
>They say that the nodes are clean! And the doctor thinks he got it all,
>but im still scared. I cant even imagine going thu rad for my mouth. It
>sounds painful.

I had chemoradiation four years ago and I'm very pleased with the
results. I have still very satisfactory salivary function and my taste
buds are working as well as before radiation. Modern radiation therapy
is very effective, and even more effective when accompanied with
chemotherapy. Nowadays most of the radiation therapy is done as a
computer controlled IMRT (intensity modulated radiation therapy),
which allows targeting more radiation to tumor areas than healthy
areas, and some vulnerable areas can be left without radiation, if the
doctors so decide. I had 6-7 weeks of radiation, 5 times a week, and
chemo once a week. The chemo doses in chemoradiation therapy are not
as large as in the sole chemotherapy.

The radiation does not cause any pain, on the contrary, if tumor
causes pain, the radiation eliminates it. It may, however, cause mouth
and throat to become temporarily inflamed, which can cause pain, when
swallowing. I didn't get that, but some people do. There are ways to
overcome that pain. First, many hospitals insert a feeding tube (PEG
tube) through the stomach wall before radiation of head and neck
areas, which allows you to take your food in liquid form straight to
the stomach. For me it was a life-saver, because I didn't have any
appetite. If the hospital does not insert feeding tube as a standard
procedure, request for it, it's worth the trouble. The tube will be
removed some time after radiation, when it's assessed that you can
already take enough food through your mouth. Secondly, inflammation
related swallowing pain can be eliminated or reduced with local
anesthetic liquids, with which you can gurgle your mouth and throat.
Regular painkillers also help.

>I smoked for 28 years and believe that was the cause,
>but i am struggling with not smoking too. I Know i have to quit----im
>fresh outta surgery---only two weeks!
>
I strongly suggest that you quit smoking. Besides increasing the risk
of recurrence, smoking also reduces the efficacy of radiation therapy.

>I feel lucky, but im very scared it may come back or that they didnt get
>it all. Yet they said everything looks great!
>
>I cant talk well, and i cant eat well and i drool alot! LOL
>
Talking probably gets better over time, and so does eating.


--
Matti Narkia

Candace Slice wrote:
> Thank you Janet for responding! I have to go to my onocologist and i
> think from there we will see if ill need Rad. Im very frightend of rad
> because it burns the mouth. But i have to trust the doctors know what
> they are doing.
>
> They think they got it all.....i PRAY theyre right!
>
> Hi Peter, i see you have joined the club! Im sorry for you, but your
> posts make you seem fearless! I met a guy that had a severe case of
> tongue cancer and he had chemo, rad and surgery. Hes walking around. The
> cancer is gone! There is hope! He did say it was difficult tho....but
> any cancer treatment is hard! Best of luck to you!
>

Candy,

I'm not going to lie to you. The radiation is a nightmare. If it is
recommended, please, please consider going to a major cancer center.
Local and regional hospitals don't see enough H&N cancer patients to be
able to deal with the side effects as effectively. It's more than just
the burn. There is the problem of getting nutrition. There are lasting
side effects that can damage your ability to open your mouth. There are
special exercises that one gets at a major cancer center to help with
swallowing and keeping the neck muscles from getting stiff. Speech
therapists monitor your progress. Nutritionists understand why you can't
eat and offer solutions. Feeding tubes are suggested BEFORE the patient
is too weak to withstand their insertion. Wound care nurses help with
the outside radiation burns. Therapists help you to cope. Pain
management teams try to make you as comfortable as possible.

A former neighbor just stopped radiation at the regional center here.
They were killing her with the cure. She decided she would rather die of
cancer than of radiation therapy. There was no one to work with the side
effects until it was too late. No preventative care.

I can't stress how important I believe a major cancer center is for H&N
radiation. The local oncologist who made my appointment at MD Anderson
Cancer Center in Houston told me that the regional center is wonderful
for radiation treatments for the more popular forms of cancer but if
they see one or two H&N patients a year it's a big deal. I did consult
with the local radiation oncologist and all I got was a small pamphlet
that talked about side effects. There was no comparison to the team
approach I got before the radiation started at the major center.

Let us know what happens at the doctor's office.

Janet

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

On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
<kelliepoodle@yahoo.com> wrote:

>Candace Slice wrote:
>> Thank you Janet for responding! I have to go to my onocologist and i
>> think from there we will see if ill need Rad. Im very frightend of rad
>> because it burns the mouth. But i have to trust the doctors know what
>> they are doing.
>>
>> They think they got it all.....i PRAY theyre right!
>>
>> Hi Peter, i see you have joined the club! Im sorry for you, but your
>> posts make you seem fearless! I met a guy that had a severe case of
>> tongue cancer and he had chemo, rad and surgery. Hes walking around. The
>> cancer is gone! There is hope! He did say it was difficult tho....but
>> any cancer treatment is hard! Best of luck to you!
>>
>
>Candy,
>
>I'm not going to lie to you. The radiation is a nightmare.

It depends. I was in quite a bad shape when I started radiation, so
for me the radiation was a relief. I had chemoradiation, and the chemo
part of it caused nausea and vomiting, although the doses were not as
large as in the regular chemotherapy. Hemoglobin will go down, I
needed blood transfusion. I lost quite bit weight as well, but it has
all come back now. So I agree that radiation, especially
chemoradiation is no picnic, but there is nothing in it, which cannot
be tolerated.

>If it is
>recommended, please, please consider going to a major cancer center.
>Local and regional hospitals don't see enough H&N cancer patients to be
>able to deal with the side effects as effectively. It's more than just
>the burn.

That's good advice, IMHO.

>There is the problem of getting nutrition. There are lasting
>side effects that can damage your ability to open your mouth. There are
>special exercises that one gets at a major cancer center to help with
>swallowing and keeping the neck muscles from getting stiff. Speech
>therapists monitor your progress. Nutritionists understand why you can't
>eat and offer solutions. Feeding tubes are suggested BEFORE the patient
>is too weak to withstand their insertion. Wound care nurses help with
>the outside radiation burns.

I couldn't agree more about the feeding tube. It's absolutely
necessary, IMHO, and should indeed be inserted before the radiation
starts.

>Therapists help you to cope. Pain
>management teams try to make you as comfortable as possible.
>
>A former neighbor just stopped radiation at the regional center here.
>They were killing her with the cure. She decided she would rather die of
>cancer than of radiation therapy. There was no one to work with the side
>effects until it was too late. No preventative care.
>
That's a shame. I didn't have that bad side effects. I would go
through the chemoradiation again, if it were necessary and possible.
Unfortunately, if cancer recurs, it's no longer possible to get full
dose radiation.


--
Matti Narkia

Matti Narkia wrote:
> On Mon, 16 Apr 2007 19:53:10 -0400, candysliced@webtv.net (Candace
> Slice) wrote:

>> I cant talk well, and i cant eat well and i drool alot! LOL
>>
> Talking probably gets better over time, and so does eating.

Matti's right. It will take several weeks until the swelling on your
tongue from the surgery goes down. In my experience the tongue and mouth
are very slow to heal. I still have sore areas from the radiation that I
completed in mid-September, but things are getting better. My last big
mouth lesion is healing finally.

I also agree with the feeding tube advice. I didn't get one and would
have been so much better off if I had. By the time I asked for it, I had
had my stomach carved up due to emergency surgery for a ruptured colon
and there was no place to put it between the open incision and the huge bag.


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

Uncle Sally wrote:

> Candace summary
> I found a lump near the front of my tongue about 5 months ago. I thought
> about cancer,b ut that happens to "other people" right? Well, it happened to
> me.
>
> I had close to half of the tongue removed and 17 lymphnodes extracted. They
> say that the nodes are clean! And the doctor thinks he got it all, but im
> still scared. I cant even imagine going thu rad for my mouth. It sounds
> painful. I smoked for 28 years and believe that was the cause, but i am
> struggling with not smoking too. I Know i have to quit----im fresh outta
> surgery---only two weeks! <end Candace summary>
>
>
> Welcome to this group ! If you view the message I just sent to Peter,
> you'll find details on my tongue cancer and my treatments. My tumor is in
> the base of my tongue, and I am told that tumors there are quite different
> from tumors of the front part of the tongue.
>
> Highly recommend you read the many posts of J. and Janet Wilder : imho, full
> of wise and caring words, and good information.
>
> I'd like to reassure you that radiation is painless in itself, but the side
> effects are what you will have to deal with.

I looked at your reply to Peter and you haven't had your RT yet? Just chemo,
right?
We'll see if you have an easier time of it, being in a different country.

PS there's something wrong with your Outlook Express settings.
Is it set to "inline"? and should be set to "quoted" ? Please have a look see,
Uncle Sally.
J

Matti Narkia wrote:

I didn't have that bad side effects. I would go
> through the chemoradiation again, if it were necessary and possible.
> Unfortunately, if cancer recurs, it's no longer possible to get full
> dose radiation.

I think each individual tolerates it differently. I had 30 IMRT
sessions. I was lucky to have had a dental oncologist who made me a
stent for my mouth that helped save my salivary glands and protected my
soft palate, another reason for going to a major cancer center.

I'm glad I can't ever have radiation there again. If the cancer comes
back, I'll just check into hospice when the time comes. The quality of
my life has become more important than the quantity of my life, but that
is my own decision.

I did fairly well with the radiation until the last 4 treatments when my
colon ruptured. I finished the treatments while still an inpatient after
the surgery. I was not really prepared for the radiation effects to
continue after the treatments stopped. I think that month after the end
of the treatments was the worst for side effects.

I hope Candy doesn't have as difficult a time as I did. I'd hate to see
anyone go through it at all, but if it's necessary, it has to be done.
If it has to be done, it should, IMO, be done at a major center.

I know that MD Anderson can arrange for housing for their patients
during therapy. There are places available from motel rooms to rented
condos. We have a motor home so we were able to stay in an RV park close
to the hospital that offered a free shuttle to the medical centers and a
special medical rate. Many motels and hotels in Houston offer shuttles
and medical rates for hospital outpatients. MD Anderson has it's own
travel and housing service. I'm sure the other major centers do, too.

There are organizations that will help defray the costs for those who
can't afford it and even one that will fly cancer patients on corporate
or private jets to the medical centers.

Treatment at a major cancer center can be had. It's not an impossibility
and the centers do whatever they can to help prospective patients.


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

J. wrote :

"I looked at your reply to Peter and you haven't had your RT yet? Just
chemo, right?

We'll see if you have an easier time of it, being in a different country."

Dear J.,

In my message to Peter I said : "And I've now completed 17 200 rad RT
sessions." And I also mentioned in the message that I am scheduled for
multiple CT scans and work-up for "3d conformal mapping" RT after 25 of
these "general" irradiations of my whole neck and throat area have been
done.

I really like the idea that "being in a different country" would make a
difference

Given the side-effects I've had so far, I'm afraid that "Amazing Thailand"
is not making RT go down any easier. I wish somebody had told me about the
feeding-tube thing before I started RT, even though I suspect that, like
Janet, I would have not opted for it. And that is one decision that might
have been "colored" by my awareness that in pre-rainy season and (soon to
be) rainy season Thailand my exposure to possible infectious agents could be
much higher than in the US.

best, Uncle Sally

Uncle Sally wrote:

> J. wrote :
>
> "I looked at your reply to Peter and you haven't had your RT yet? Just
> chemo, right?
>
> We'll see if you have an easier time of it, being in a different country."
>
> Dear J.,
>
> In my message to Peter I said : "And I've now completed 17 200 rad RT
> sessions." And I also mentioned in the message that I am scheduled for
> multiple CT scans and work-up for "3d conformal mapping" RT after 25 of
> these "general" irradiations of my whole neck and throat area have been
> done.
>
> I really like the idea that "being in a different country" would make a
> difference
>
> Given the side-effects I've had so far, I'm afraid that "Amazing Thailand"
> is not making RT go down any easier. I wish somebody had told me about the
> feeding-tube thing before I started RT, even though I suspect that, like
> Janet, I would have not opted for it. And that is one decision that might
> have been "colored" by my awareness that in pre-rainy season and (soon to
> be) rainy season Thailand my exposure to possible infectious agents could be
> much higher than in the US.
>
> best, Uncle Sally

Oh thanks Uncle Sally,
I missed that part, in your post. I thought you'd had RT, but missed it, in that
post.
Then there is a difference between countries. You sound like you are not having
as hard a time of it as some of the others here and posting so much more than
most of them did, during their treatments. And all of them, if I recall
correctly are from the US.
So have you compared the number treatments and (dose of )rads with what others
had?
It would be interesting to compare.

Sorry to hear abou tthe rainy season starting there.
Stay away from sick people.
And keep your hands away from your eyes and nose.
That's what they tell us here
Stay as well as you can, please.
J

On Tue, 17 Apr 2007 11:44:04 -0500, Janet Wilder
<kelliepoodle@yahoo.com> wrote:

>Matti Narkia wrote:
>
> I didn't have that bad side effects. I would go
>> through the chemoradiation again, if it were necessary and possible.
>> Unfortunately, if cancer recurs, it's no longer possible to get full
>> dose radiation.
>
>I think each individual tolerates it differently. I had 30 IMRT
>sessions. I was lucky to have had a dental oncologist who made me a
>stent for my mouth that helped save my salivary glands and protected my
>soft palate, another reason for going to a major cancer center.
>
I didn't have a stent, but because I had IMRT, my radiation specialist
was able to save one salivary gland, which seems serve me well enough.

>I'm glad I can't ever have radiation there again. If the cancer comes
>back, I'll just check into hospice when the time comes. The quality of
>my life has become more important than the quantity of my life, but that
>is my own decision.
>
I wouldn't do that (check into hospice). I would search for other
options. Erbitux (cetuximab) for example has become available after I
had my chemoradiation. As for radiation, I have understood that, when
using IMRT, I can still get the full dose in the tumor areas, but not
much in the surrounding tissues. Then there is regular chemotherapy
and tetrathiomolybdate, experimental angiogenesis inhibitor, which is
available by prescription in USA, but unfortunately not yet here in
Finland. I could further modify my diet, get more exercise and so on.
I think that together these measures could help at least for some
time, and who knows what new treatments are available after a few
years. Already now there exists an experimental treatment called boron
neutron capture therapy, which so far has mainly been used to treat
brain cancers, but recently have been successfully used in some cases
of head and neck cancers also here in Finland. In Finland the boron
neutron capture therapy is available at Helsinki University Central
Hospital, and the actual equipment is within the premises of Helsinki
Technical University, who has developed it and maintains it. When I
had completed my chemoradiation therapy, the radiation specialist
treating me told me about this possibility, if I ever had recurrence.
There are facilities also at least in Italy, USA and Japan.

Below some scientific references about boron neutron capture therapy:

Aihara T, Hiratsuka J, Morita N, Uno M, Sakurai Y, Maruhashi A, Ono K,
Harada T.
First clinical case of boron neutron capture therapy for head and neck
malignancies using 18F-BPA PET.
Head Neck. 2006 Sep;28(9):850-5.
PMID: 16721735 [PubMed - in process]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=16721735>
<http://www3.interscience.wiley.com/cgi-bin/fulltext/112635789/HTMLSTART>
(full text)

Barth RF, Coderre JA, Vicente MG, Blue TE.
Boron neutron capture therapy of cancer: current status and future
prospects.
Clin Cancer Res. 2005 Jun 1;11(11):3987-4002. Review.
PMID: 15930333 [PubMed - indexed for MEDLINE]
<http://clincancerres.aacrjournals.org/cgi/content/full/11/11/3987>

Joensuu H, Kankaanranta L, Seppala T, Auterinen I, Kallio M, Kulvik M,
Laakso J, Vahatalo J, Kortesniemi M, Kotiluoto P, Seren T, Karila J,
Brander A, Jarviluoma E, Ryynanen P, Paetau A, Ruokonen I, Minn H,
Tenhunen M, Jaaskelainen J, Farkkila M, Savolainen S.
Boron neutron capture therapy of brain tumors: clinical trials at the
finnish facility using boronophenylalanine.
J Neurooncol. 2003 Mar-Apr;62(1-2):123-34.
PMID: 12749708 [PubMed - indexed for MEDLINE]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&list_uids=127497 08&dopt=Abstract>

Barth RF.
A critical assessment of boron neutron capture therapy: an overview.
J Neurooncol. 2003 Mar-Apr;62(1-2):1-5. Review.
PMID: 12749698 [PubMed - indexed for MEDLINE]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=12749698>

Kato I, Ono K, Sakurai Y, Ohmae M, Maruhashi A, Imahori Y, Kirihata M,
Nakazawa M, Yura Y.
Effectiveness of BNCT for recurrent head and neck malignancies.
Appl Radiat Isot. 2004 Nov;61(5):1069-73.
PMID: 15308194 [PubMed - indexed for MEDLINE]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=15308194>

Trivillin VA, Heber EM, Nigg DW, Itoiz ME, Calzetta O, Blaumann H,
Longhino J, Schwint AE.
Therapeutic success of boron neutron capture therapy (BNCT) mediated
by a chemically non-selective boron agent in an experimental model of
oral cancer: a new paradigm in BNCT radiobiology.
Radiat Res. 2006 Aug;166(2):387-96.
PMID: 16881740 [PubMed - indexed for MEDLINE]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=16881740>

Kamida A, Obayashi S, Kato I, Ono K, Suzuki M, Nagata K, Sakurai Y,
Yura Y.
Effects of boron neutron capture therapy on human oral squamous cell
carcinoma in a nude mouse model.
Int J Radiat Biol. 2006 Jan;82(1):21-9.
PMID: 16546900 [PubMed - indexed for MEDLINE]
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlu s&list_uids=16546900>

Kreimann EL, Itoiz ME, Longhino J, Blaumann H, Calzetta O, Schwint AE.
Boron neutron capture therapy for the treatment of oral cancer in the
hamster cheek pouch model.
Cancer Res. 2001 Dec 15;61(24):8638-42.
PMID: 11751376 [PubMed - indexed for MEDLINE]
<http://cancerres.aacrjournals.org/cgi/reprint/61/24/8638.pdf>


There are at least two ongoing Boron Neutron Capture Therapy (BNCT)
clinical trials accepting Head and Neck Cancer patients:

Boronophenylalanine (BPA)-Based Boron Neutron Capture Therapy (BNCT)
in the Treatment Head and Neck Tumors
<http://www.clinicaltrials.gov/ct/show/NCT00114790?order=2>

Boronophenylalanine-Fructose Complex (BPA-F) and/or Sodium Borocaptate
(BSH) Followed By Surgery in Treating Patients With Thyroid Cancer,
Head and Neck Cancer, or Liver Metastases
<http://www.clinicaltrials.gov/ct/show/NCT00062348?order=5>

But as far as I understand, it seems that this latter trial does not
include the actual Boron Neutron Capture Therapy, but just checks
whether the patients would benefit it by measuring the boron uptake by
tumor cells after the paitents have been given
Boronophenylalanine-Fructose Complex (BPA-F) and/or Sodium Borocaptate
(BSH). I don't know whether eligible patients will be sent to BNCT
after the surgery.


General information about BCNT:

Boron neutron capture therapy (BNCT)
<http://en.wikipedia.org/wiki/BNCT>

Boron Neutron Capture Therapy
<http://everything2.com/index.pl?node_id=1181312>

Boron neutron capture therapy
<http://www.cancerhelp.org.uk/help/default.asp?page=3879>

Boron Neutron Capture Therapy (BNCT)
<http://www.virtualtrials.com/bnct.cfm>

The Basics of Boron Neutron Capture Therapy
<http://web.mit.edu/nrl/www/bnct/info/description/description.html>

Boron Neutron Capture Therapy (BNCT)
<http://www.pd.infn.it/~torniell/ricerca/bnct.htm>

Boron: Boron Neutron Capture Therapy
<http://www.lycos.com/info/boron--boron-neutron-capture-therapy.html>


Here's a head and neck cancer related boron neutron capture
therapy¨(BNCT) reference to a Finnish presentation at 12th
International Congress on Neutron Capture Therapy. Kagawa, Japan:

Dose verification of BNCT head and neck patients with TLD
Karila, Johanna; Seppälä, Tiina; Séren, Tom; Nieminen, Katja;
Kankaanranta, Leena; Auterinen, Iiro; Savolainen, Sauli
12th International Congress on Neutron Capture Therapy. Kagawa, Japan,
9 - 13 Oct. 2006
Advances in Neutron Capture Therapy 2006. Proceedings of ICNCT-12.
Nakagawa, Y.; Kobayashi, T.; Fukuda, H. (Eds). International Society
for Neutron Capture Therapy (2006), 429 - 432

>I did fairly well with the radiation until the last 4 treatments when my
>colon ruptured.

How did that happen? Did you have radiation in colon area, too?

>I finished the treatments while still an inpatient after
>the surgery. I was not really prepared for the radiation effects to
>continue after the treatments stopped. I think that month after the end
>of the treatments was the worst for side effects.
>
That can happen. But tumors also continue shrinking after the
radiation has been completed.

>I hope Candy doesn't have as difficult a time as I did. I'd hate to see
>anyone go through it at all, but if it's necessary, it has to be done.
>If it has to be done, it should, IMO, be done at a major center.
>
Perhaps your symptoms were worse, because you didn't have feeding
tube? I think that lack of sufficient nutrition could do that.

I as well hope that Candy gets to a major center, gets a feeding tube
and manages without too bad side effects.


--
Matti Narkia

Matti Narkia wrote:

> On Tue, 17 Apr 2007 11:44:04 -0500, Janet Wilder wrote:
>
> >Matti Narkia wrote:
> >
> > I didn't have that bad side effects. I would go
> >> through the chemoradiation again, if it were necessary and possible.
> >> Unfortunately, if cancer recurs, it's no longer possible to get full
> >> dose radiation.
> >
> >I think each individual tolerates it differently. I had 30 IMRT
> >sessions. I was lucky to have had a dental oncologist who made me a
> >stent for my mouth that helped save my salivary glands and protected my
> >soft palate, another reason for going to a major cancer center.
> >
> I didn't have a stent, but because I had IMRT, my radiation specialist
> was able to save one salivary gland, which seems serve me well enough.
>
> >I'm glad I can't ever have radiation there again. If the cancer comes
> >back, I'll just check into hospice when the time comes. The quality of
> >my life has become more important than the quantity of my life, but that
> >is my own decision.
> <snip 165 lines>>I did fairly well with the radiation until the last 4 treatments when my
> >colon ruptured.
>
> How did that happen? Did you have radiation in colon area, too?

Pain meds.
J

"Candace Slice" <candysliced@webtv.net> wrote in message
news:13410-46243E9E-967@storefull-3131.bay.webtv.net...
> Thank you Janet for responding! I have to go to my onocologist and i
> think from there we will see if ill need Rad. Im very frightend of rad
> because it burns the mouth. But i have to trust the doctors know what
> they are doing.
>
> They think they got it all.....i PRAY theyre right!
>
> Hi Peter, i see you have joined the club! Im sorry for you, but your
> posts make you seem fearless! I met a guy that had a severe case of
> tongue cancer and he had chemo, rad and surgery. Hes walking around. The
> cancer is gone! There is hope! He did say it was difficult tho....but
> any cancer treatment is hard! Best of luck to you!
>
Just got back from the 2nd chemo treatment. Still doing well, still a little
shaky.
Slight nausea afterward, but the compozine seemed to do the trick.
Brought back my appitite, I just ate two pancakes with maple syrup.
Peter

"Matti Narkia" <mna@mbnet.fi> wrote in message
news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com...
> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
> <kelliepoodle@yahoo.com> wrote:
>
>snipped<
>
> I couldn't agree more about the feeding tube. It's absolutely
> necessary, IMHO, and should indeed be inserted before the radiation
> starts.
> snipped<
>
> --
> Matti Narkia

So I'm looking at radiation for H&N cancer in about 2 weeks.
I don't know anything about the dosages.
Will I be able to eat anything?
You think I should request a feeding tube? Can you give a little insight
on their use? Where is it inserted?
Peter

On Tue, 17 Apr 2007 17:51:58 GMT, "Peter" <pd_hendrickson@hotmail.com>
wrote:

>
>"Matti Narkia" <mna@mbnet.fi> wrote in message
>news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com.. .
>> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
>> <kelliepoodle@yahoo.com> wrote:
>>
>>snipped<
>>
>> I couldn't agree more about the feeding tube. It's absolutely
>> necessary, IMHO, and should indeed be inserted before the radiation
>> starts.
>> snipped<
>>
>> --
>> Matti Narkia
>
>So I'm looking at radiation for H&N cancer in about 2 weeks.
>I don't know anything about the dosages.
>Will I be able to eat anything?

Nobody knows that in advance. Some H&N cancer patients can eat at
least a little during radiation, but some can't eat at all. But I
think it's safe to save that practically no one can eat enough.

>You think I should request a feeding tube?

Absolutely, IMHO.

>Can you give a little insight
>on their use? Where is it inserted?

The tube used here in Finland goes through your stomach skin into your
stomach. The tube is inserted in local anesthesia through the mouth
into the stomach, where it's pointed tip is used to pierce through the
stomach wall, and tube is then pulled through the small hole out of
the stomach, so that only the catheter tip and securing round internal
bumper remain in the stomach. This operation is painless. When the
tube is no longer needed, the doctor simply takes firm grip of the
tube and pulls. The internal bumper will give in, and the tube will
come nicely and painlessly out of the stomach.

The following links may give a clearer picture:

Tube Feeding
<http://www.oralcancerfoundation.org/dental/tube_feeding.htm>

Percutaneous Endoscopic Gastrostomy (PEG)
<http://www.clevelandclinic.org/health/health-info/docs/2000/2000.asp?index=4911&src=newsp>

Percutaneous Gastrostomy and Jejunostomy
<http://www.emedicine.com/radio/topic798.htm>


--
Matti Narkia

Uncle Sally wrote:

> In my message to Peter I said : "And I've now completed 17 200 rad RT
> sessions." And I also mentioned in the message that I am scheduled for
> multiple CT scans and work-up for "3d conformal mapping" RT after 25 of
> these "general" irradiations of my whole neck and throat area have been
> done.

200 rads sounds like a pretty small dose. IIRC, some of the folks who
were posting here while I was undergoing my radiation were getting up to
900 rads. I believe I had 600.

I probably have the whole thing wrong. Steph, what say you?

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

Peter wrote:
> "Candace Slice" <candysliced@webtv.net> wrote in message
> news:13410-46243E9E-967@storefull-3131.bay.webtv.net...
>> Thank you Janet for responding! I have to go to my onocologist and i
>> think from there we will see if ill need Rad. Im very frightend of rad
>> because it burns the mouth. But i have to trust the doctors know what
>> they are doing.
>>
>> They think they got it all.....i PRAY theyre right!
>>
>> Hi Peter, i see you have joined the club! Im sorry for you, but your
>> posts make you seem fearless! I met a guy that had a severe case of
>> tongue cancer and he had chemo, rad and surgery. Hes walking around. The
>> cancer is gone! There is hope! He did say it was difficult tho....but
>> any cancer treatment is hard! Best of luck to you!
>>
> Just got back from the 2nd chemo treatment. Still doing well, still a little
> shaky.
> Slight nausea afterward, but the compozine seemed to do the trick.
> Brought back my appitite, I just ate two pancakes with maple syrup.
> Peter
>
>
Peter,
I was given Zofran for nausea and it worked wonderfully. The pill
dissolves on your tongue so you don't even have the pain of swallowing.

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

Peter wrote:
> "Matti Narkia" <mna@mbnet.fi> wrote in message
> news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com...
>> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
>> <kelliepoodle@yahoo.com> wrote:
>>
>> snipped<
>>
>> I couldn't agree more about the feeding tube. It's absolutely
>> necessary, IMHO, and should indeed be inserted before the radiation
>> starts.
>> snipped<
>>
>> --
>> Matti Narkia
>
> So I'm looking at radiation for H&N cancer in about 2 weeks.
> I don't know anything about the dosages.
> Will I be able to eat anything?
> You think I should request a feeding tube? Can you give a little insight
> on their use? Where is it inserted?
> Peter
>
>

I can't answer about the tube. I was so scared of it I didn't really
listen to them then I canceled the appointment. I do remember that there
would be anesthesia.

You will probably be able to eat for a while. When your mouth gets too
sore to chew, you will be able to swallow nutritional drinks and water.
I used High protein Boost. For me, it was the very end of the treatment
and the month after the treatment that was the worst for eating.

Besides the pain from the radiation, there is the loss of taste buds.
Before they stop working completely, they get weird. Food that you used
to like tastes hateful. Some people report water tasting oily. To me
water tasted like skim milk. Coffee was so vile it made me gag.

When saliva is diminished the ability to eat certain foods is a problem.
Dry things like breads and cake just stick to your mouth and gums. I
joked about being able to afford to eat all the calories in an entire
birthday cake, but I couldn't masticate it, swallow it or taste it.

I had to have 3 teeth pulled before they would start the radiation. They
were very careful to make sure nothing in my mouth was prone to
infection and the teeth weren't very healthy so out they came. One was a
molar on the side of my mouth that has a tongue. Chewing was a real
problem for me and still, to some extent is.

I also found that I could not tolerate high or low temperatures of food
or beverages. Everything that went into my mouth had to be room
temperature. I still can't tolerate hot foods or drinks, but cold is a
little easier. Not great, but easier. I can at least eat ice cream now.

While you can eat. Eat a lot. Take very good care of your teeth before,
during and after radiation. Get the softest brush you can find. Do the
baking soda rinses your radiation team prescribes. Do your exercises. If
it becomes overwhelming, make a spread sheet as I did and check things off.

I carried a bag to radiation. In the bag was a container of baking soda,
a pint-sized plastic bottle, a bottle or two of water, a jar of Aquaphor
and a bottle of Boost. Immediately after the radiation treatment, I went
to the lady's room and did my baking soda rinse. I also slathered on my
Aquaphor cream. If the treatment was late, or I had a clinic visit, I
had my nutrition and hydration with me. I also had a book in the bag.

I hope I've helped you. Good luck.

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

On Tue, 17 Apr 2007 14:14:23 -0500, Janet Wilder
<kelliepoodle@yahoo.com> wrote:

>Peter wrote:
>> "Matti Narkia" <mna@mbnet.fi> wrote in message
>> news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com...
>>> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
>>> <kelliepoodle@yahoo.com> wrote:
>>>
>>> snipped<
>>>
>>> I couldn't agree more about the feeding tube. It's absolutely
>>> necessary, IMHO, and should indeed be inserted before the radiation
>>> starts.
>>> snipped<
>>>
>>> --
>>> Matti Narkia
>>
>> So I'm looking at radiation for H&N cancer in about 2 weeks.
>> I don't know anything about the dosages.
>> Will I be able to eat anything?
>> You think I should request a feeding tube? Can you give a little insight
>> on their use? Where is it inserted?
>> Peter
>>
>>
>
>I can't answer about the tube. I was so scared of it I didn't really
>listen to them then I canceled the appointment. I do remember that there
>would be anesthesia.
>
But usually only local anesthesia. It's simple, painless, and very
quick operation. There is absolutely no need to be scared of it.
>
>I had to have 3 teeth pulled before they would start the radiation. They
>were very careful to make sure nothing in my mouth was prone to
>infection and the teeth weren't very healthy so out they came. One was a
>molar on the side of my mouth that has a tongue. Chewing was a real
>problem for me and still, to some extent is.
>
Bad and root-canal treated teeth should be pulled out before
radiation. The reason is that the radiation worsens the circulation of
jaw bones so much, that if a tooth is pulled out after the radiation,
the hole left in the jaw by the root of the removed tooth will not
heal.

The dentist I saw before the radiation asked me how many teeth I
wanted pulled. I replied that I don't want any trouble at all with my
teeth after the radiation, and I'm ready to give up even all my teeth
if necessary. She left a few front teeth in my lower jaw :-). I have
no problem with that decision.


--
Matti Narkia

"Janet Wilder" <kelliepoodle@yahoo.com> wrote in message
news:46251885$0$31607$c3e8da3@news.astraweb.com...
> Peter wrote:
> > "Candace Slice" <candysliced@webtv.net> wrote in message
> > news:13410-46243E9E-967@storefull-3131.bay.webtv.net...
> >> Thank you Janet for responding! I have to go to my onocologist and i
> >> think from there we will see if ill need Rad. Im very frightend of rad
> >> because it burns the mouth. But i have to trust the doctors know what
> >> they are doing.
> >>
> >> They think they got it all.....i PRAY theyre right!
> >>
> >> Hi Peter, i see you have joined the club! Im sorry for you, but your
> >> posts make you seem fearless! I met a guy that had a severe case of
> >> tongue cancer and he had chemo, rad and surgery. Hes walking around.
The
> >> cancer is gone! There is hope! He did say it was difficult tho....but
> >> any cancer treatment is hard! Best of luck to you!
> >>
> > Just got back from the 2nd chemo treatment. Still doing well, still a
little
> > shaky.
> > Slight nausea afterward, but the compozine seemed to do the trick.
> > Brought back my appitite, I just ate two pancakes with maple syrup.
> > Peter
> >
> >
> Peter,
> I was given Zofran for nausea and it worked wonderfully. The pill
> dissolves on your tongue so you don't even have the pain of swallowing.
>
> --
> Janet Wilder
> Bad spelling. Bad punctuation
> Good Friends. Good Life

Thanks! I'll ask the Dr. about it.
Peter

"Matti Narkia" <mna@mbnet.fi> wrote in message
news:dp2a23p3su2b6nlj4k1r6mocegscbit3v4@4ax.com...
> On Tue, 17 Apr 2007 17:51:58 GMT, "Peter" <pd_hendrickson@hotmail.com>
> wrote:
>
> >
> >"Matti Narkia" <mna@mbnet.fi> wrote in message
> >news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com.. .
> >> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
> >> <kelliepoodle@yahoo.com> wrote:
> >>
> >>snipped<
> >>
> >> I couldn't agree more about the feeding tube. It's absolutely
> >> necessary, IMHO, and should indeed be inserted before the radiation
> >> starts.
> >> snipped<
> >>
> >> --
> >> Matti Narkia
> >
> >So I'm looking at radiation for H&N cancer in about 2 weeks.
> >I don't know anything about the dosages.
> >Will I be able to eat anything?
>
> Nobody knows that in advance. Some H&N cancer patients can eat at
> least a little during radiation, but some can't eat at all. But I
> think it's safe to save that practically no one can eat enough.
>
> >You think I should request a feeding tube?
>
> Absolutely, IMHO.
>
> >Can you give a little insight
> >on their use? Where is it inserted?
>
> The tube used here in Finland goes through your stomach skin into your
> stomach. The tube is inserted in local anesthesia through the mouth
> into the stomach, where it's pointed tip is used to pierce through the
> stomach wall, and tube is then pulled through the small hole out of
> the stomach, so that only the catheter tip and securing round internal
> bumper remain in the stomach. This operation is painless. When the
> tube is no longer needed, the doctor simply takes firm grip of the
> tube and pulls. The internal bumper will give in, and the tube will
> come nicely and painlessly out of the stomach.
>
> The following links may give a clearer picture:
>
> Tube Feeding
> <http://www.oralcancerfoundation.org/dental/tube_feeding.htm>
>
> Percutaneous Endoscopic Gastrostomy (PEG)
>
<http://www.clevelandclinic.org/healt...000.asp?index=
4911&src=newsp>
>
> Percutaneous Gastrostomy and Jejunostomy
> <http://www.emedicine.com/radio/topic798.htm>
>
>
> --
> Matti Narkia

Thanks for the links, very helpfull.
Peter

"Janet Wilder" <kelliepoodle@yahoo.com> wrote in message
news:46251c20$0$30542$c3e8da3@news.astraweb.com...
> Peter wrote:
> > "Matti Narkia" <mna@mbnet.fi> wrote in message
> > news:dgl923ppb67bspf9h77eph2g7g34dd205d@4ax.com...
> >> On Tue, 17 Apr 2007 09:07:11 -0500, Janet Wilder
> >> <kelliepoodle@yahoo.com> wrote:
> >>
> >> snipped<
> >>
> >> I couldn't agree more about the feeding tube. It's absolutely
> >> necessary, IMHO, and should indeed be inserted before the radiation
> >> starts.
> >> snipped<
> >>
> >> --
> >> Matti Narkia
> >
> > So I'm looking at radiation for H&N cancer in about 2 weeks.
> > I don't know anything about the dosages.
> > Will I be able to eat anything?
> > You think I should request a feeding tube? Can you give a little insight
> > on their use? Where is it inserted?
> > Peter
> >
> >
>
> I can't answer about the tube. I was so scared of it I didn't really
> listen to them then I canceled the appointment. I do remember that there
> would be anesthesia.
>
> You will probably be able to eat for a while. When your mouth gets too
> sore to chew, you will be able to swallow nutritional drinks and water.
> I used High protein Boost. For me, it was the very end of the treatment
> and the month after the treatment that was the worst for eating.
>
> Besides the pain from the radiation, there is the loss of taste buds.
> Before they stop working completely, they get weird. Food that you used
> to like tastes hateful. Some people report water tasting oily. To me
> water tasted like skim milk. Coffee was so vile it made me gag.
>
> When saliva is diminished the ability to eat certain foods is a problem.
> Dry things like breads and cake just stick to your mouth and gums. I
> joked about being able to afford to eat all the calories in an entire
> birthday cake, but I couldn't masticate it, swallow it or taste it.
>
> I had to have 3 teeth pulled before they would start the radiation. They
> were very careful to make sure nothing in my mouth was prone to
> infection and the teeth weren't very healthy so out they came. One was a
> molar on the side of my mouth that has a tongue. Chewing was a real
> problem for me and still, to some extent is.
>
> I also found that I could not tolerate high or low temperatures of food
> or beverages. Everything that went into my mouth had to be room
> temperature. I still can't tolerate hot foods or drinks, but cold is a
> little easier. Not great, but easier. I can at least eat ice cream now.
>
> While you can eat. Eat a lot. Take very good care of your teeth before,
> during and after radiation. Get the softest brush you can find. Do the
> baking soda rinses your radiation team prescribes. Do your exercises. If
> it becomes overwhelming, make a spread sheet as I did and check things
off.
>
> I car