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Author |
Topic: Remission/Recurrence |
daddysgirl
Member
Member # 391
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hi my dad has stage 4 throat cancer.it hit in the gums ,the
tongue,and where your tongue meets your throat.it has hit
all the lymphnodes above the neck.with grim statistics, my
dad opted for combined radiation and chemo.he finished all
treatments 3 and1/2 weeks ago.just a few days ago his tongue
turned black.also in the back it looks like some type of growth
because the sufrace of the tongue is lifted up and he can
no longer stick out his tongue.he also has white dots and
patches in his mouth.any thoughts?
Posts:
1 | From: Phoenix, AZ | Registered: Oct
2002 |
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Brian
Hill
Administrator
Member # 4
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Sorry it took so long for someone to respond to you. When
a visible symptom occurs rapidly, such as overnight, as opposed
to a long-term gradual appearance, it limits the types of
problems that come to mind. Remember that your father has
just had his immune system beaten up by his treatments, and
a variety of opportunistic funguses, bacteria and virals can
take hold without much resistance from the immune system.
A fungal outbreak after the natural flora and balance of microorganisms
in the oral environment has been disturbed by radiation treatments
for instance, is a common occurrence. A condition commonly
referred to as black hairy tongue is actually a fungal bloom
and occurs quite rapidly, as does Candida fungus when the
other organisms that keep them in check are destroyed by antibiotics,
chemotherapy, or radiation. While it is hard to tell from
your description if this is exactly what is happening, it
could be a likely scenario. I would like to hear back from
you to find out what this actually was when your doctors tell
you. It will also help other readers of this message board
who might be surprised some morning with a snow-white tongue
(Candida Albicans) or something similar.
--------------------
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:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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bjensen232
Member
Member # 393
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Brian thanks for answering i am her mother of Daddy's Girl
the doctor said it was black harry tougue got the mircle wash
and antibotics and Diflucan she hope's it will be gone in
7 days he has a PET scan coming up on November 7th as well
as a MRI on November 12th so we can see what the next step
is I notice that most people have surgery done to remove lymthnodes
his metasized on both sides of the neck and the cancer ate
from the inside out looks grim but we are hoping with Chemo
as massive as it was along with Radiation everyday that this
works she says she has tried it on six patients and they got
to 2 years and she will call if cancer free do not understand
that when she said that he only had maybe 3months to 8 months
without the treatment maybe you can answer that for me it
seems the other patients at stage 4 is still going through
quite a bit he did not lose his hair he worked mostly but
lost a lot of weight she says she zapped him with some highly
toxic chemo he already had over abundance of red blood cells
and thats why he did not become enimic but he is so tired
still and requires a lot of sleep the other problem he had
he would have to have a pint of blood taken out every 6 weeks
because his body produced to much so he was our hemo and onc
doctor do not no why she did not find the cancer she said
that he had it a year or more before it was discovered also
his denist was the one that found it and sent him to the ent
that specialist in that field it is in the back of the tongue
and other places on the inside cheek when they did the biopsy
he says it was on both sides of the neck in his lyphnodes
and mastized there excuse the spelling I guess that is all
the history I can think of at this time i really am confused
as is my daughter about the whole thing and am wondering what
next
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bobbie jensen
Posts:
11 | From: Phoenix AZ | Registered: Oct
2002 |
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Brian
Hill
Administrator
Member # 4
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Bobbi......before I attempt to answer your question, I just
wanted to add this comment. Please find the period key on
your computer keyboard; this post was really hard to read!!
I suspected this was a fungus (black "hairy" tongue) and Diflucan
is very effective at getting rid of it. So while it is shocking
to look at, it isn't a serious condition unless it goes untreated.
I think your question is how did the doctor make the leap
from a few months of survival to 2 years with treatment. Treatments
that are successful at getting rid of the original cancer,
are judged successful after two years of post treatment survivorship.
Statistically, those of us with oral cancers have a high chance
of recurrence, or secondary primaries. The phrase "cancer
free" is the best that any of us get. You are never really
cured of cancer; the best that any doctor can tell you is
that at that particular moment in time, all signs of the cancer
are gone. The phrase remission essentially means the same
thing. Remission does not mean gone, it means not active.
The issue is the very nature of cancer cells. It takes four
or more mutations of a normal cell to genetically be altered
into a malignant cell. We are just beginning to understand
in some cancers what this sequence of mutations is, and what
causes the process to begin. Essentially what genes were damaged
or altered, and what the consequences of that alteration are,
and then what caused the alteration in the first place. I
will use myself as an example. Since I never smoked or had
any of the risk factors (that we knew of five years ago),
what caused my cells in the soft tissues (squamous tissues)
of my mouth to mutate into a carcinoma was an unanswered question.
The doctors treated me, and at the end of radiation and surgery,
through the diagnostic technology that was available, they
were unable to find any local or distant cancer. But what
ever caused the cancer could still be with me, (perhaps a
virus like HPV 16/18, which we now are starting to list as
a risk factor if you are positive for it), or some few individual
cancer cells could still be in my body somewhere prospering
and growing over the next few years, into something that is
finally big enough to be visible to the diagnostic tools we
have available to us. So a recurrence in "medical speak" could
also mean, that it was never really completely gone, and those
few errant cells have finally duplicated enough to become
a mass large enough to be seen, or the causative factor, such
as a virus is still in me and capable of causing another sequence
of mutations. While they say that I am cancer free now, whether
I remain that way is dependent on whether the causative agent
is still with me, potentially doing the same thing all over
again, or perhaps one of these undetectable micro metastasis
is with me that will eventually grow to be big enough to be
found in the future. There is no cure for cancer. You are
just free of it, for a month, a year, a decade.or until that
Mac truck with your name on the bumper comes around the corner,
and something else gets you. While we all would like to hear
the word cure, healthy for now is what we get. This is part
of what it means to be a survivor. Most survivors try not
to dwell on it, and get on with their lives in as normal a
manner as possible. But it is always in the background of
your thoughts. Almost five years out, even now, if I get a
little sore in my mouth...from accidentally biting my cheek
and not realizing it, or I get a new pain somewhere, it is
never something simple and benign, my first thought is always
the damn cancer. Personally I don't care how strong you are
emotionally, fear is part of everyone's make up, at least
in some degree. Once you have been through this little bit
of hell on earth, it is part of who you are. The trick is
to try to keep perspective. There was a point, when I thought
I wasn't going to make it, that a few months seemed like a
long time, and I was happy to have them. Then when my next
goal was to make it to two years, that seemed like a long
time. Now retrospectively the last five years since diagnosis
seems like a long time. If you are lucky, life goes on for
a very long time after your dance with the devil.. but you
are never cured, physically or emotionally.
--------------------
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:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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elem510
Member
Member # 235
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Dear Brian, Bravo! That is the best explanation of oral cancer
and survival that I have read. Thank you. LM
Posts:
23 | From: Cape Cod MA | Registered: Jul
2002 |
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Dinah
Platinum Member (100+ posts)
Member # 203
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Good words Brian,
I am going to print this link, you have explained the cure/remission/survivor
very well. This will help me to explain in the future.
Thanks..
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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Brian:
This is definitely a keeper and you missed your calling, kid-come
and teach a nursing lecture for me because I think my students
could understand you better!
File this reply to the "threads" column you are planning.
Cheers,
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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Thank you all for the kind words. The "gift of gab" can be
both a blessing and a hindrance. I do not believe that anyone
has ever used the phrase "economy of words" and my name in
the same sentence!!
--------------------
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:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
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