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Author |
Topic: A Typical Path Of Treatment |
kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Everyone:
My name is Kim (kcdc) and my partenr is Dave (DaveC). For
those of you who have seen my earlierr posts in other sections
of the board, Dave and I have been on a perpetual "fact finding"
mission since Dave received his diagnosis of squamous cell
CA last week.
To recap, Dave is 47 with no other health problems, does not
smoke or drink heavily so this was very out of the blue.
Best we can tell, his lesion is approx. 3cm near the tonsil
fossa on the right side and does NOT involve his tongue or
jaw bone. He as one enlarged node on the right side which
some MD's say could have CA in it and some say may not.
Dave feels very well otherwise and woudl not have known anything
was wrong at all except for the mouth ulcer he developed 3-4weeks
ago.
So, in the last week we have been to Mass Eyes & Ear and Mass
General which are the top head/neck locations in the Boston
area.
We have met collectively with 3 head and neck surgeons, had
his case reviewed by a heme onc M.D. and he has been presented
ot the full tumor board and we have met with a radiation oncologist.
We are both nurses and understand the technical aspects of
the 2 primary treatment options but we want to hear from REAL
people who have chosen either one to help guide our choice
which is a follows:
1. Surgery with the graft/flap procedure and modified radical
neck dissection followed by radiation by 6 weeks after surgery.
2. No surgery but the M.D. Anderson protocol of booster chemo
with radiation that changes into twocie daily radiation by
the end of the course.
As you may have seen in my earlier postings, all of the doctors
here have assured us that at Dave's stage of disease (II-III).
both of these options are equal and qwould probably give him
the same outcome. Brian has responded that he has not read
comparable results or seen them published. Being skeptics,
we are still leaning toward cutting the lesion out which then
gives the pathologist and exact birds eye view of size and
nodes involved, etc.
But, the radiation/heme onc guys are convincing too. I used
to be an oncology nurse and have this lurking fear that the
option of double doses of chemo and radiation could make the
cure far worse than the original problem and really jeopardize
Dave's otherwise good health more than surgery would.
This is where you all come in-has anyone lived either or even
both of these options and can give us the REAL scoop about
what it feels like to do either? How long did it take to bounce
back? How long did most of you REALLY keep your PEG tubes?
Could you function and eat?
How about extent of chemo/radiation side effects?
Dave is cleared to be off from now-January but I am afraid
if he goes with the non-surgical option he may still be very
sick by then.
Thanks in advance for the help-I am finding you are an infinite
source of insight.
Kim
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kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Hi Kim. Like you and Dave, last spring I was in a serious
information gathering mode, and this forum was the best place
for real life info.
Okay. My tumor was in the retro trigone area (behind where
wisdom teeth would be). I opted for the surgery and graft,
the modified neck dissection, followed by 7 weeks of daily
radiation and weekly chemo. Although I emerged from the surgery
with gigantic neck swelling, there was no pain and I had plenty
of energy. Lateral massage reduced the swelling greatly and
fast. After the radiation (I was fortunate in having the newer
IMRT variety which may account for the outcome) and chemo
I felt just fine and if I were working, could have gone right
back. I would guess the fact that I was in great physical
condition going in, with a positive mind set, had a bearing
on my good outcome. I don't plan to have to do this again,
but would choose the same plan if I had to.
To be perfectly honest, I will tell you that the chemo supressed
my immunity to nothing and shortly after finishing the above-described
treatments and feeling wonderful, I landed in the hospital
for 8 days in isolation with a galloping infection. This,
and not the earlier treatments, laid me out flat and I am
still getting my energy back.
I still have the PEG only because I have just front teeth
remaining which do not chew well at all and at this point
I am particularly concerned about receiving balanced nutrition.
As soon as my blood count is normal, I will switch to protein
enriched drinks I make myself and lose the tube.
I hope this helps. I am sure you will get other detailed answers.
Please let me know if you have any questions I can answer.
BTW, I was surprised and pleased to find that at least the
doctors I had contact with appreciated the fact that I was
well so informed. This is an improvement over the way things
used to be.
Good luck to both of you!
Joanna
Posts:
213 | From: Pacific Northwest | Registered:
Mar 2002 |
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Brian
Hill
Administrator
Member # 4
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Your husband's cancer, and lack of risk factors duplicate
my own experience in all respects including location. I had
no surgery to remove the primary, but had that addressed at
MDACC though radiation. At the end of the treatments, there
was still some question if the cervical nodes which were visible
on the MRI were cancer free or not. A modified radical neck
dissection removed all suspect tissues, and the nodes were
found to be cancer free. I do not regret progressing to the
surgery. Make no bones about it, when you get a full course
of radiation, it knocks you down. Your immune system is in
the crapper and opportunistic things like Candida are a regular
occurrence till it bounces back. Like your husband I was in
excellent overall health other than the cancer, and even though
a stage 3-4 (bilateral nodes), I was a physically strong patient
able to take (at least physically) the punishing treatments.
Looking at my experience with the benefit of 4 years of subsequent
survival, I do not regret any choices I made, including declining
a wash of chemo at the end of it all to wipe out any errant
micrometastasis that was too small to show up through diagnostic
techniques. I had a PEG for almost a year. My throat and mouth
were trashed from the radiation and swallowing was out of
the question. IMRT has become available at MDACC since my
go at things, and my radiation oncologist there is very pleased
with the results he is getting. Less collateral damage and
xerostomia. Though no one knows for sure if the fact that
IMRT, and it's more targeted approach, misses non visible
micrometastasis in nodes more distant from the primary such
as near the clavicle, which I in a broader band blast, got
nuked. An argument that this is an unnecessary concern is
that the nodes are in well-defined chains, and if it had progressed
to a secondary node chain it would be in the terminal node
of the previous chain. The quality of my life during treatments
and for at least 6-8 months afterwards was horrible. But within
a year I was back to normal, riding a Harley, talking too
much, and eating pretty much anything I wanted that wasn't
dry. There are long term effects which I have to be extremely
careful of, such as the possible periodontal issues that a
lack of saliva produces. But meticulous hygiene and a regular
tooth cleaning every three months, has made these also a non-issue.
You obviously know the long-term effects of radiation treatments,
and it is possible that in the future I could develop some
other problems. While the percentage is low, people can develop
radiation-induced osteosarcomas, and that crosses my mind
now and again. Of course in normal survivor manner, when I
get a cough, it is cancer, when I get a headache it's a brain
tumor... However, I might add that the numbers for those who
have a recurrence are much higher than those that develop
sarcomas 15 years later. My last point is that you should
remember that this thing moves quickly, particularly once
it has access to the nodes and the lymph system. Research
is a good thing, but don't dance with this thing too long.
Remember during the dance it is leading, not you. Pick a path
and get on it...soon.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
368 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Brian:
As usual, your reply is real, informative, and so helpful.
I have shared all of the information with Dace. He is on the
surgical schedule at Mass Eye & Ear for 9/16 which was the
soonest date we could get. We have held to spot during the
research/second opinion process to make sure we had one for
exactly the reasons you outline-we need to lead the waltz,
not our cancerous friend.
One curious thing-in speaking with the radiation oncologist
this week, I inquired about radiation to the nodes on the
affected side BEFORE surgery which they said probably was
necessary if the nodes were going to come out during surgery
anyway. I just relaized from your post above that you progressed
to surgery and had not initially had it to remove the primary.
I assume then that you did not go through the flap & graft
procedures.
So, I still have thsi overriding question about how we know
that the radiation/chemo route will actually shrink the primary?
Are most squamous cell lesions sensitive? It still feels safer
in some respects to remove the lesion and nodes and do the
blast of radiation to follow. Noone has mentioned the option
of a course of chemo too if we go the surgical route but I
will inquire.
Dave did have a chect film the other day and we did get the
green light to ask for a spiral chest CT although the guys
the other day at his stage the risk was low but never say
never and if we want it they'll order it. So, I am pleased
to report that the MGH/ Mass Eye & Ear Team and seems very
human with the exception of the one surgeon who is a little
shy on the bedside manner but by all accounts a superior technician
which is okay as long as he isn't the point pain running our
team.
How long was your actual course of radiation prior to the
neck dissection? I am very concerned (and have seen way too
many bad reactions) to think that Dave will actually be able
to resume work in January if we choose the the chemo radiation
option. If he then needed to progress to a subsequent surgery
that would take an enourmous financial toll on us since we
depend on two paychecks.
Dave is a big Harley fan too so maybe you have a lot more
in common than you know.
Think you are right-make a decision and make peace with having
made it...
Will keep you posted,
Kim
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kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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Brian
Hill
Administrator
Member # 4
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I had 6 and half weeks of radiation, 5 days a week with the
weekends off. The last week I had double doses of radiation
morning and afternoons. I would have to look through my records
to tell you my total volume of exposure, but they had essentially
reached the maximum dose my spinal column could take at this
stage of things. I had no intra oral surgery. No flaps no
graft. Although I might add this view, not for the weak of
stomach. After the 3rd week I was coughing up bloody chunks
of flesh from my throat, and I mean this literally. I could
see them in the sink. The tissue slough off from the radiation
destruction was perhaps the equivalent of surgical removal
of the same tissue. The protocol from MDACC is well established
and has a high success rate. The surgeon never suggested in
the tumor board that he should go in first. His only comment
was that surgery after radiation has it's own set of complications
as the tissue becomes gummy and sticky and does not cut the
same, making the neck dissection a more tedious process.
Posts:
368 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Brian:
have received lots of additional correspondence from nurse
friends and other survivors. We are pretty sure Dave is going
to do the surgery with the lymph node dissection on 9/16 followed
by radiation and hopefully not chemo too but we'll see. The
info about the tissue sloughing does make sense but you are
right-it's a bonus prize not for the faint of heart to swallow
no pun intended.
Think Dave is going to e-mail you directly but once again,let
me thank you on behalf of both of us for your expedient replies
and amazing support. I am hooked on this board and see it
as a safe place for us and lots of others.
Best,
Kim
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kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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CynthiaS
Senior Member (75+ posts)
Member # 161
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Hi Kim,
Just another story to add to your information gathering.
My mother has stage IV tonsillar squamous cell that migrated
to her soft palate. Also bilateral lymph node involvement.
Because of the lymph node involvement, she was not able to
have the IMRT.
She had twice daily radiation for 32 days - total dose 7680.
Also had once weekly doses of cisplatin for 5 weeks, sixth
week was carboplatin because of low blood counts.
My mother did not have a PEG tube and is still plugging along.
Now, how long this will last is a mystery because I she is
taking in very little calories and I feel this will be a detriment
to her recovery - but this is something, as a daughter, that
I have been unable to convey to her and have to let it ride
it's course.
But she managed the above treatments quite well despite her
71 yrs. Still have a month to wait for follow-up CT to find
out status. Although her lymph nodes have obviously shrunk,
she most probably will have a neck dissection within 6 weeks.
I know it's difficult to feel 100% comfortable with the choices
- I have always wondered why surgery on the tonsil was not
even suggested for my mother, but there comes a point when
you have to bite the bullet and hope for the best.
With you by his side, Dave surely will have a positive response
to this. Have faith in yourselves as well as the doctors.
Best wishes,
Cynthia
Posts:
79 | From: Florida | Registered: May
2002 |
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Brian
Hill
Administrator
Member # 4
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Dear kcdc,
I was just rereading your post, and realized that I did not
address one of your primary questions. And that is how will
you know if the primary has shrunk. There will be a series
of diagnostic CT's and or MRI's during and after treatment,
from which they can measure the actual size of the lesion,
and the treatments impact on it. Your next sentence about
being sensitive is ambiguous to me so I will give you two
answers. First of all none of my tumors were sensitive to
me. I had no pain or discomfort, and most oral SCC's are this
way. That is why so many people do not realize something is
wrong until late in the game (plus the fact that our dental
medical communities are not looking for oral cancer, but that's
a whole 'nuther story). If you meant are they sensitive to
the treatments, radiation is extremely effective against oral
cancers, much more than chemotherapy agents. I think your
course of surgery and radiation is a good choice. With the
surgery first, he will receive a lesser dose of radiation,
which in the long run is a good thing.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
368 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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DaveC
Contributing Member (25+ posts)
Member # 308
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Hi Brian and all, thanks for the speedy info and testimonials
- all of which have been great comfort to us even if not all
are rosy ... not that we are looking for rosy just others'
experiences (good, bad, or indifferent)with the different
treatment modalities. Brian, Kim's question re sensitivity
was as you surmised to do with treatment. As I type this there
is one question that springs to mind ... how were you post-surgically
following the neck dissection? This web-site never ceases
to amaze me in terms of member involvement and the speed with
which replies are posted. Hope I can be of service to others
post-surgery - I know I'll have the time even if the enregy
supply might be flagging.
Take care, Dave
Posts:
30 | From: MA | Registered: Aug 2002
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Brian
Hill
Administrator
Member # 4
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There were two issues post surgically for me, one was physical
the other emotional. The physical was the easiest one for
me to deal with. To fully understand what follows, you need
to know that in my lifetime I have had a few traits which,
at this stage of my life, I am not particularly proud of.
I have been egotistical, vain, and centered around my own
achievements. While I have grown away from these traits as
a result of my cancer experience, they nevertheless were who
I was during treatment and recovery. So while I healed fairly
rapidly physically after a modified radical neck dissection,
when I looked at myself, and at the faces of those who looked
at me, (with the exception of Ingrid), I became depressed.
Acute weight loss, sunken eyes and cheeks from poor nutrition
and chronic lack of sleep, skin the color of an old piece
of uncooked chicken that has been left in the fridge too long,
all contributed to the reflection someone who I didn't recognize
in the mirror. Of course I was already clinically depressed,
months of morphine and psudo-morphines, one set back after
another with various infections, Candida, pain, gastrointestinal
issues etc., the direct recognition of my mortality, and now
my physical appearance.. They all took their toll on my emotional
state. This wasn't the rock climbing, aerobatic pilot, scuba
instructor, live life on the edge, self made businessman that
I knew. I was frail, scared, weak, physically unattractive,
and uncertain for the first time about the future, and no
longer in control of my own destiny (as if any of us really
are). Obviously in retrospect I am embarrassed to admit all
this, as there are so many more than me who lose greater portions
of their anatomy, suffer greater pains, and deal with worse
traumas both physical and emotional in a more exemplary manner.
It was humbling to me to say the least. But in retrospect
I needed that humbling. I doubt with an ego as big as mine,
a lesser experience would have brought me to my knees like
this one did. The right side of my neck was gone, and the
left side was blown up like a balloon with all the accumulated
lymph fluids that didn't know where to go, and there was additional
swelling below the incision for the same reasons. To say that
it all looked bad is an understatement. It looked like someone
had hit me on the right side with a pipe and it was all pushed
over to the left. For the first couple of weeks I had about
50 staples in my neck so it looked like a zipper. Gradually
over the course of a year, the tissue fluids found new pathways
out of my neck and the swelling went down. The redness of
the surgical scar subsided and it was less raised from the
rest of the tissues. Massage helped alleviate all this, and
I recommend that as soon as you have your staples or stitches
out, you commence with a daily program of it. The feeling
has never returned to the right side of my neck. This might
be an issue for someone who has not had radiation, as shaving
requires caution. But for me the dose was high enough to kill
off all the hair follicles on both sides so I don't have to
engage in that manly endeavor shaving anymore, and have been
left with a goatee, which has come into style these days.
The surgical experience, at least as far as the neck dissection,
was the most benign of the treatments in terms of discomfort,
longevity of issues, etc. and should be the part you concern
yourself with the least.
As to giving back when it was all over and I was on the other
side of things, this is part of a new person who has emerged
from the cancer experience. A better person actually. I have
found that people are affected in one of two ways after a
brush with infinity. There are those that are changed by it,
embrace the reality of our mortal and finite existence, and
who throw themselves full bore at not wasting a precious minute
of that time which is left. They live fully, and many as you
can see from the participation of people in OCF, reach out
to lessen the load of others as they travel this path. With
no corporate sponsorship of any consequence, OCF continues
to exist after my start up capitalization as a result of the
financial benevolence of this group of individuals. The other
group is very different. They distance themselves from the
experience, (including contact with others who remind them
of the experience) and try to forget it as quickly as possible,
and continue on as they were before. I do not find their behavior
unusual since as a society we do not discuss death much, and
tend to avoid accepting it as a natural part of our lives.
Their lack of desire to acknowledge the acuteness of the experience
they have just gone through is a defense mechanism which is
well honed in most people.
We are all changed by this experience, given the good fortune
to survive it. Whether that change is internalized, or manifests
itself as an obvious alteration of how we deal with life and
others, is as unique an outcome as each individual. Surgery
of any type is a scary thing, and emotions that acknowledge
that fact are both appropriate and logical.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
368 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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DaveC
Contributing Member (25+ posts)
Member # 308
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Hi Brian:
This is actually Kim but somehow I got logged in this way
today-hmmm...maybe there are not accidents and it's a team
sign. Your most recent reply is stirring and I need to share
with with Dave and ponder the thoughts you share. Thanks for
being so "out there" with the emotional piece of the puzzle.
I have more to say but want to get a chance to let your words
sink in first-they feel very healing.
Kim
Posts:
30 | From: MA | Registered: Aug 2002
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youngerag
"Above & Beyond" Member (200+ posts)
Member # 12
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To Dave and Kim, Brian's message is right on. I also had a
modified radical neck dissection and still do not have any
feeling in that side of my neck. It will be two years on September
12th and even though I am physically healthy, I'm having a
hard time recovering mentally. In fact I just admitted this
past June that I was still depressed and suffering. Everyone
thought I was doing so well, but I found that I was more and
more internalizing my situation. Trying to make the world
think that all was okay. Well it isn't. I still can get it
through my thick skull that things will never be the same
again. My tongue won't grow back and it will continue to hurt
daily, my neck will always be numb, the scars won't go away
and my tongue will forever be sewn to the bottom of my mouth.
This site has in many ways been a very good outlet for me.
I have admitted things openly that I would not do otherwise
with my family and friends. Good luck with your surgery and
you will be on the minds of all that particpate in this site.
Take care and keep us posted. Anne.
--------------------
Anne G.Younger
Life has never been better.
Posts:
204 | From: Wilmington, Delaware | Registered:
Mar 2002 |
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Dave C, here is a small hope. I had a right side modified
neck dissection, with accompanying swelling and numbness,
but 4 months later, a lot of feeling is returning. I remember
the lead surgeon telling me when I was drugged up, something
about transplanting or reattaching a nerve and it would take
about six months to start working. Perhaps this is something
new that is now being done, because there is definite feeling
where there was none at all a couple of months ago. Being
able to feel my ear makes pierced earrings so much easier
(grin). You might ask your surgeon about this (the nerves,
not the earrings).
Joanna
Posts:
213 | From: Pacific Northwest | Registered:
Mar 2002 |
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Dinah
Platinum Member (100+ posts)
Member # 203
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Dave C & Kim,
I too had the radical neck dissection...then on to 8 weeks
of radiation. The swelling is still there somewhat; but has
lessened and as Brian said, the fluid finds other places to
go after I get up in the morning. Feeling is starting to return
to the neck, ear, and shoulder. Just started massage a couple
of months ago because the PT who is working on the trismus
(not the doctor, who said "oh that will go away") has incorporated
that into my sessions. The waddle - well I'd like to think
it has gone down, and really it has, but probably my vanity
will say it's never enough. Don't have to worry about the
shaving thing, but I have a closet full of turtle necks that
we'll see if I can wear this winter. Take care,
Dinah
Posts:
113 | From: Texas | Registered: Jun 2002
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kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Dinah:
Thanks for valuable input, and I know lots of people who have
a "waddle" who don't even have surgery to thank for it so
at least you have an excuse.
Okay, so Dave and I have both lived in Texas recently (Houston
& Galveston) and are still long distance doctoral students
at UTMB at Galveston. Where are you? Turtlenecks in Texas?
A foreign concept to a New Englander but I always got a chuckle
there when 60 degree weather brought out parkas and mittens.
Hope this day finds you feeling well...
Best, Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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Dinah
Platinum Member (100+ posts)
Member # 203
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Hey Kim,
From one of the parkas & mittens people: "I represent that."
I just thought I got cold easily before radiation ...after
well, I carry a sweater with me everywhere. Restaurants show
no mercy.
My other excuse is that I'm a traveling salesman and I travel
to places that do have a real winter.
You guys take care & keep us posted.
Dinah
Posts:
113 | From: Texas | Registered: Jun 2002
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Eileen
Member
Member # 153
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Five years ago I had an unknown primary that metastasized
into one lymph node in the neck, had neck disecction and 36
treatments of radiation. Last year, they found a tiny tumor
on my voice box in the only spot they couldn't get a laser,
(can't do radiation, can only do that once), with no metastatis.
This one cost me my voice box, gave me a permanent trach and
a neck dissection on the other side. For what it worth, I
have virtually no scars left from either neck dissection,
so it is not always horrible. Anyway here are few things to
remember and/or ask doctors about.
Surgery:
1. Make certain that you are in a comfortable position on
the operating table. These are long procedures. The first
time I wasn't and had back pain for months. The second time
they forgot to put the kidney board in the table. If I hadn't
complained, I would have had trouble again.
2. After surgery, be certain to support arm on side with neck
dissection. Hold with other arm when walking. I supported
with a stuffed bear my niece gave to me when I was in bed,
riding in car, or sitting. Keeps the drag from the neck. Also
prevents pulling in back. Also don't lift anything. I bought
a 3/4 lb peach and carried it 5 blocks and paid for it for
months. Keep the arm supported for several weeks until you
can walk comfortably without feeling like it is going to fall
out. Also don't go back to work too soon after surgery. First
time I went in 10 days and pulled arm out of wack. Second
time I took 8 weeks and had no problem.
3. Get Physical Therapy from a good head and neck man. Helps
to prevent scarring and helps head and neck movement. Hopefully
they will not have to cut any arm muscle or nerves. Ask them.
4. Don't let them remove any saliva glands unless it is absolutely
necesssary. My first doctor did because he said they wouldn't
work after radiation so why not. Well the ones I have do work,
just not as efficiently as before. Second doctor left saliva
gland. Unfortunately I couldn't talk him out of taking half
of thyroid and parathyroid. I should have been more adamant
about it. Now I'm on thyroid meds because second side didn't
kick in because of the radiation. Don't think they have any
reason to go after your thyroid but I'd ask. For some thyroid
meds are no problem, for others it takes forever to get us
back to normal.
5. I used BIAFINE cream on the scars to help healling. This
seems to work just fine. I also had mostly stitches, not clamps.
I told both doctors that I didn't do scars. The one I had
last year, you can't even find the cut.
Radiation:
1. Again BIAFINE. They didn't give it to me until I was so
burnt I couldn't turn my head. When reading the instructions,
it said to start using before radiation to help prevent burning.
Now they tell me. Ask about it, but I would use it on surgery
anyway. Much better than the AQUAPHOR they gave me.
2. They may want to remove teeth before radiation. They took
16 from me including some perfectly good ones. Both my periodontist
and the cancer specialist who finally made me teeth, say from
the xrays they saw, there was no reason to remove those teeth.
Get a second opinion if you have any doubts about whether
teeth need to be removed. Soemtimes they is trouble with the
gums after the radiation so they can;t make you false teeth.
I had to wait a year and half. Should have kept my own.
3. Don't know what type of radiation you are having, but you
can only have it to an area once. Can they limit the area
they are radiating. With my unknown primary they fried me
from the tops of my ears to my armpits. Reaosn I now have
a trach rather than just having radiation on tiny tumor.
4. Can they avoid radiating your saliva glands or put stents
over them?
5. Are they going to give you Salagen or some other drug to
help saliva? You should take something.
6. Make sure you get some execise. I froze from 9th treatment
on and went to bed for 18 to 20 hours a day until it was over.
Lost all the muscle tone in my legs and will never get it
back to where it was. Don't do that. It will be fall - go
take nice walks.
6. They burnt my tongue so badly I couldn't drink bottled
water much less eat anything else but ENSURE. After they burnt
it, they decided to give me a stent for my tongue. Don't know
if you can get one since part of your problem is in that area.
7. Got thrush so badly that it took 6 months and steroids
to clear it. Don't know how to prevent this, but ask.
8. Go to periodontist every two weeks to keep teeth clean
during radiation period.
The thing I would stress most is saving the saliva glands
because this is what will affect you most for the rest of
your life. I would also try to find a pen pal on the internet
who went through this recently that you can ask questions.
It makes you feel like your're not allone. The one I found,
I'm still friendly with. I'd volunteer but will be Europe
for a month while you are going through this (you see they
is life after radiation). Also there is an organization called
SPOHNC that has a good newsletter and some support groups.
They are on the web also.
Best of luck to you and we're all rooting for you.
Posts:
8 | From: N.J. | Registered: May 2002
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digtexas
Platinum Member (100+ posts)
Member # 320
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I just completed the MD Anderson protocol at MD Anderson.
The chemo is given in very small doses and the side effects
were mild. The real problem is the burned mouth from the twice
a day radiation. I grew intolerant of food a couple of weeks
ago and got the PEG. I find it quite easy to feed myself with
the PEG. I cannot say how long I will have it. My tumor, at
the base of the tongue was too large to allow me an option
of surgery. The docs seem to think that my nodes are shrunken
or non existent and that the tumor itself is quite diminished
as well. I will have a CT scan in Oct. to determine if surgery
is still needed. Although my mouth is burned, now that I don't
use it to eat, I feel very little pain, and, with the PEG,
at least am able to get my nutrition.
I hope that this was helpful.
Posts:
112 | From: Houston, Texas | Registered:
Sep 2002 |
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digtexas
Platinum Member (100+ posts)
Member # 320
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Brian,
This is my first time here and I found your letters interesting
and informative. Of course I went from periodontist, to dentist
to endodontist, to even a radiologist buddy of mine, but every
one thinks that a fit, healthy 54 year old must have allergies
or reflux, or something benign. Once I was diagnosed, I certainly
went through many of the humbling experiences that you mentioned.
Fortunately it has not been disfiguring, although I am skinnier
with a lot redder neck than when I started. Lance Armstrong
said that cancer was the best thing that ever happened to
him. I am not sure if I can go that far at present, but I
will say that it has had many positive side effects. I never
really knew how many people really cared about me, and showed
it by offering to help me, whether in business, or with rides,
etc. Furthermore, if this stuff doesn't give you some perspective
on what is important in life, then nothing will.
Perhaps I am kidding myself since I just finished treatment
this morning, but now I am having to deal with the real possibility
that I may be returning to my old life of work, etc, not being
a cancer patient or a disabled person after all. I was kind
of getting used to the idea of not really returning to work,
collecting disability, perhaps trying something completely
different, like teaching ( I am a trial lawyer ), and yet,
now, I realize that I might be going back, essentially, to
my old life. I read an article that said that these are common
anxieties. Gosh, I might not get to be a martyr after all!
Certainly, life will be different than before no matter what...for
one thing my ex wife has become so kind and considerate!!
Anyway, I enjoyed your letters and wanted to throw in my two
cents.
Dan G.
Posts:
112 | From: Houston, Texas | Registered:
Sep 2002 |
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kcdc
Platinum Member (100+ posts)
Member # 307
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To Joanna, Eileen, Dinah (I'll send you mittens-hope I didn't
offend),DigTexas(Dan):
You guys are great and Eileen gets the prize for the big bonus
of helpful tidbits to ask. I now have a NEW list of questions
to tackle before Dave's surgery on 9/16. Mass General Hosp.
here does indeed have a local chapter of SPOHNC and we have
made the contact and already have received a "buddy" who also
happens to be the chaplain at MGH who will help us with the
process. I am going to my first meeting next Tuesday eve while
Dave will be hospitalized in the hospital next door.
I continue to be amazed at the strength of this network of
"virtual strangers" who now have become my lifeline of trusted
comrades as we all walk through living this experience together.
I have printed all of these replies and am gathering them
so I can rely on all of you to get me through next week. If
only I could bring a laptop to the hospital waiting area!
So, Dave and I had our last meeting with surgeons on this
past Friday and the reality of what we are facing next week
looms large. I am wondering how any of you dealt with the
few days prior to surgery and/or how your loved ones dealt
in the first couple of days? Dave is having he flap/graft
procedure and a modified radical neck dissection. They have
told us that the reconstructive piece is longest and can make
the surgery anywhere from 6-20 hours. I thinking at least
Dave will be under anesthesia and an option to sedate myself
looks good too. I am so worried about feeling frantic as the
hours tick by. I plan to ask for updates during the surgery
and am mobilizing a personal support team to help me through
that day so I can be best able to help dave when the surgery
is over.
Every step on this journey feels overwhelming at times but
you all remain our collective inspiration. Any thoughts you
could share about how to decrease the pre-op fear factor would
be greatly appreciated.
Hope this day finds you all well,
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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Eileen
Member
Member # 153
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Go to the beach or wherever makes you happiest and eat all
of your favorite foods. It will be a while before you can
eat most of them again. If you put on a few pounds who cares,
might even help you later. Try not to think about it. Relax.
I vacationed for a week before each of my surguries. Save
all those precious memeories and sounds to get you from panicing
the morning of the surgery.
We'll we rooting for you!
Posts:
8 | From: N.J. | Registered: May 2002
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Packer
66
Platinum Member (100+ posts)
Member # 96
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For what it`s worth, I had total laryngectomy, total glossectomy,
subtotal mandibulectomy. bilateral modified radical neck dissection,
pectoral muscle flap, and last, but not least, fibular free
flap reconstrution..........in surgery about 16 hrs........by
then my bp was low, and microsurgery was posponed........the
following day, I was awake and alert, spent 3 days in ICU,
and was ready for discharge in 7 days. The night before surgery
was the hardest on both of us, because we knew I would never
speak again.............I have surgery coming up on the 30th,
cause I`m still a work in progress...........My surgery was
in Boston and my wife couldn`t be with me..........as a Buddhist,
she hung onto her rosary all day, and burned incense........she`s
already laid in 500 sticks for my next adventure......and
the reconstruction stuff does take a lot longer than removing
everything........My or record is mindboggling............and
I think partners should also be sedated through the whole
thing! We will keep you in our prayers ![[Smile]](/archive_boards/smile.gif)
Posts:
147 | From: Maine | Registered: Apr 2002
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Dinah
Platinum Member (100+ posts)
Member # 203
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Kim & Dave,
My thoughts and prayers are with you. Wish I could impart
great words of wisdom, but for my part everything was almost
a blur (in memory anyway) From the first surprise of having
cancer in a minor out patient surgery; to the radical neck
2 weeks later...(I made them put it off because of a sales
appointment. My doctor was not impressed.) I was only in the
hospital 2 nights, and thank goodness my daughter flew in
to be with us. That gave my husband a much needed break to
go home and pet the animals. Cause I wasn't a lot of comfort
to him.
Kim, I think you are doing the right thing by trying to be
prepared for everything, but as the caregiver, you too will
need a support system. I still think my husband had it harder
than me. I got to sleep through the surgery, and sleep walk
through radiation.
Please keep us posted and know that we'll respond anytime
you need us to. If you want to give me your phone number privately
on email I'll call you (ain't cell phone minutes wonderful)
So much of the technical stuff I'm not good at, but if you
need a shoulder. I have one really good one left.
And no I wasn't offended. Actually thought it was funny.
Take care,
Dinah
Posts:
113 | From: Texas | Registered: Jun 2002
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kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Eileen, Packer, & Dinah:
Thanks for the prompt reply and the great words of advice.
I love you Packer because you always have just the right amount
of humor and realism to make me smile.Thanks also for the
realsitic appraisal of the OR timeframe-I like your description
so much better. Is the next surgery the one where you get
the long awaited chin? Do you have a date yet? I am going
to share all of your suggestions with Dave, and research my
own options. Tough stuff riding out the highs and lows, especially
the hard conversations about being scared and health care
proxies.
Just received a healing care package from friends in Texas
yesterday which includes a stone healing bear (Native American
symbol) so now I have something to clutch for the day! Also
have a friend and all of your messages to take along.
I'll probably panic in the next few days and write more so
thanks in advance for listening and hope this day finds you
all well. Best, Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 |
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Packer
66
Platinum Member (100+ posts)
Member # 96
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I have a date........sept 30, original surgery was sept 28,
last year.......just about same time........so we are going
through the anxiety thing again, just because......I have
a teddy bear, that has traveled back and forth with me each
time for surgery, he`s even a little bloody now, if he don`t
go, I don`t go.......if you don`t hang on to your sense of
humor it gets rough..........I keep taking pictures of myself,
and my wife keeps telling me I look like a praying mantis..........hang
in there
Posts:
147 | From: Maine | Registered: Apr 2002
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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Oh yeah, Packer66, take pictures. My favorite one of me, with
eyes glazed by Schedule II narcotics, looks for all the world
like a serial killer. After some deliberation, I opted not
to use it for Christmas cards (grin).
Kim --- do take pictures of Dave so he can measure progress.
This is really important with regard to the swelling following
neck dissection. It feels huge and unchanging, but is actually
getting smaller and only a picture can prove it. And someday,
you can reach the point where I am, when the pictures are
cause for laughter.
I am off tomorrow on a back country fishing trip, but will
send strong positive energy your way on the 16th. Just remember
that Dave is not the first one to have this surgery and the
rest of us made it through, so he will too! I hope he can
characterize his surgery as a walk in the park, as I was able
to. It isn't always awful. I looked like a monster, but there
was no pain after the first night. As soon as it is allowed,
learn and practice lateral massage. Makes the swelling recede
in a remarkably short time.
Joanna
Posts:
213 | From: Pacific Northwest | Registered:
Mar 2002 |
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Packer
66
Platinum Member (100+ posts)
Member # 96
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Joanna, love the Christmas card idea.......being a greenbay
packer fan, my first pic was in my greenbay gear........cheesehead
and all.......needless to say, we very much upset my family
members, they thought my wife had drssed me up and snapped
a picture of me looking very bizarre..........since then we
decorate me for every holiday.........antlers for Christmas,
rabbit ears for easter, and I was quite a display for the
4th of july.....guess we do have a perverse sense of humor.......but,
you are right about pics so you can actually see the progress,
when you look on a daily basis, you don`t notice the improvment
as much...............
Posts:
147 | From: Maine | Registered: Apr 2002
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