joining the club

This stared with a lump on the right side of my neck.

Biopsy indicated squamous cell carcinoma.



I just received the results of my most recent biopsy. I have cancer at the
base of my tongue.

Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
to have the chemo

port installed. I haven't received copies of the reports yet.

Long range, four to six cycles of chemo followed by four to six weeks of
radiation therapy and then

possibly surgery.



45 year old white male smoker

Peter

BetsyB



"Peter" <pd_hendrickson@hotmail.com> wrote in message
news:QySSh.6553$ya1.1686@news02.roc.ny...
> This stared with a lump on the right side of my neck.
>
> Biopsy indicated squamous cell carcinoma.
>
>
>
> I just received the results of my most recent biopsy. I have cancer at the
> base of my tongue.
>
> Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
> to have the chemo
>
> port installed. I haven't received copies of the reports yet.
>
> Long range, four to six cycles of chemo followed by four to six weeks of
> radiation therapy and then
>
> possibly surgery.
>
>
>
> 45 year old white male smoker
>
> Peter
>
Welcome to the club. You could have just stopped by for a chat instead of
going to all this trouble?
I am sorry for what brought you here. But we all came for information and
this is the place to get it.
Janet Wilder had tongue cancer and is recovering nicely. I will let her tell
you the whats and wheres.
Where do you live might be a good start?
Take care and post as often as you like.

BetsyB

On Tue, 10 Apr 2007 20:36:00 GMT, "Peter" <pd_hendrickson@hotmail.com>
wrote:

>This stared with a lump on the right side of my neck.
>
My lump was also in the right side of my neck in 1988.

>Biopsy indicated squamous cell carcinoma.
>
I have/had the same cell type. Most of the head and neck cancer are
squamous cell carcinomas.
>
>I just received the results of my most recent biopsy. I have cancer at the
>base of my tongue.
>
Initially my diagnosis was also base of the tongue cancer, which later
changed to tonsil cancer, although I think that there was never
absolute certainty about the location of the primary tumor.

>Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
>to have the chemo
>
>port installed. I haven't received copies of the reports yet.
>
>Long range, four to six cycles of chemo followed by four to six weeks of
>radiation therapy and then
>
>possibly surgery.
>
>45 year old white male smoker
>
You better quit smoking before treatments, because smoking reduces
their efficacy.

Good luck.



--
Matti Narkia

On Wed, 11 Apr 2007 00:32:04 +0300, Matti Narkia <mna@mbnet.fi> wrote:

>On Tue, 10 Apr 2007 20:36:00 GMT, "Peter" <pd_hendrickson@hotmail.com>
>wrote:
>
>>This stared with a lump on the right side of my neck.
>>
>My lump was also in the right side of my neck in 1988.
>
>>Biopsy indicated squamous cell carcinoma.
>>
>I have/had the same cell type. Most of the head and neck cancer are
>squamous cell carcinomas.
>>
>>I just received the results of my most recent biopsy. I have cancer at the
>>base of my tongue.
>>
>Initially my diagnosis was also base of the tongue cancer, which later
>changed to tonsil cancer, although I think that there was never
>absolute certainty about the location of the primary tumor.
>
>>Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
>>to have the chemo
>>
>>port installed. I haven't received copies of the reports yet.
>>
>>Long range, four to six cycles of chemo followed by four to six weeks of
>>radiation therapy and then
>>
>>possibly surgery.
>>
>>45 year old white male smoker
>>
>You better quit smoking before treatments, because smoking reduces
>their efficacy.
>
>Good luck.

PS. It probably wouldn't hurt to inquire whether it could be possible
to include Erbitux into the protocol. Erbitux has just been in the
news:

Erbitux Increases Overall Survival For Head And Neck Cancer Patients
07 Apr 2007
<http://www.medicalnewstoday.com/healthnews.php?newsid=67313&nfid=crss>

"Erbitux (Cetuximab), a new drug which is used in combination
with chemotherapy, increases overall survival in patients with
recurrent and/or metastatic squamous cell carcinoma of the head
and neck, according to ImClone, the company which introduced
the drug together with Bristol-Myers Squibb.

A randomized, multi-center clinical trial (first Phase III
Study), aimed at evaluating the impact of Erbitux treatment in
combination with platinum-based chemotherapy on over survival
in matastatic head an neck cancer, has produced "exciting
results".

The trial results have been submitted for presentation at the
upcoming American Society of Clinical Oncology Meeting, June
2007, in Chicago, USA.

In the USA alone nearly 13,000 people die from head and neck
cancer each year. Men have twice the risk of developing this
cancer, compared to women - it most commonly strikes patients
over 50 years of age. It is estimated that 81,550 Americans
will be diagnosed with head and neck cancer in 2007.

The trial, known as EXTREME, treated over 400 patients. Half
were given Erbitux in combination with cisplatin plus 5-
fluorouracil (5-FU) or carboplatin plus 5-FU, while the other
half were treated with cisplatin plus 5-FU or carboplatin plus
5-FU alone.

Eric Rowinsky, M.D., Chief Medical Officer and Senior Vice
President of ImClone Systems, said "We are excited by the
results of this study, as it is the first large, randomized
clinical trial to examine the impact of Erbitux treatment in
combination with platinum-based chemotherapy on overall
survival in metastatic head and neck cancer. Erbitux has
already demonstrated improved survival when combined with
radiation in locoregionally advanced head and neck cancer."

Martin Birkhofer, M.D., Vice President, Oncology Global Medical
Affairs, Bristol-Myers Squibb, said "When ERBITUX was approved
for head and neck cancer, it was not only hailed as the first
new treatment for the disease in 45 years, but it was also the
first drug approved to show a survival benefit in this
population. Just one year later, this study adds to the growing
body of clinical evidence with ERBITUX in these patients.""


Other Erbitux related links:

Cetuximab - Wikipedia, the free encyclopedia
<http://en.wikipedia.org/wiki/Cetuximab>

"Cetuximab (marketed under the name Erbitux) is a chimeric
monoclonal antibody, an EGFR inhibitor, given by intravenous
injection for treatment of metastatic colorectal cancer and
head and neck cancer. Cetuximab was discovered by Imclone
Systems and is distributed in North America by ImClone and
Bristol-Myers Squibb, while in the rest of the world
distribution is by Merck KGaA.

Cetuximab faces stiff competition from bevacizumab (Avastin),
made by Genentech, and potential competition from panitumumab,
currently under development by Amgen and Abgenix.

Mode of action

Cetuximab is believed to operate by binding to the
extracellular domain of the epidermal growth factor receptor
(EGFR) of cancer cells, preventing ligand binding and
activation of the receptor. This blocks the downstream
signaling of EGFR resulting in impaired cell growth and
proliferation.

Clinical uses

Cetuximab is used in metastatic colon cancer and is given
concurrently with the chemotherapy drug irinotecan
(Camptosar®), a form of chemotherapy that blocks the effect of
DNA topoisomerase I, resulting in fatal damage to the DNA of
affected cells. While there is a medical laboratory test to
detect if a cancer tumor overexpresses epidermal growth factor
receptor(EGFR) on its cells surface, this overexpression has
recently been shown to not have any bearing on whether a
patient will respond to Cetuximab or not[citation needed].
Whether this is because the current tests are just not
sensitive enough to detect EGFR overexpression or because EGFR
overexpression is not linked to the drugs effectiveness has not
been established. Cetuximab was approved by the FDA in March
2006 after the publication of research performed by Dr J.
Bonner [1] for use in combination with radiation therapy for
treating squamous cell carcinoma of the head and neck (SCCHN)
or as a single agent in patients who have had prior platinum-
based therapy.

One of the side effects of Cetuximab therapy is the incidence
of, possibly sever, acne like rash. ...

ERBITUX: Patient Homepage
<http://www.erbitux.com/erbitux/erb/patient_hn/home/index.jsp?BV_UseBVCookie=Yes>

ERBITUX
<http://www.erbitux.com/erbitux/erb/home/index.jsp?BV_UseBVCookie=Yes>

Erbitux (cetuximab) Information Page - fda.gov
<http://www.fda.gov/cder/drug/infopage/erbitux/default.htm>

Monoclonal antibodies - Wikipedia, the free encyclopedia
<http://en.wikipedia.org/wiki/Monoclonal_antibody>

"Monoclonal antibodies (mAb) are antibodies that are identical
because they were produced by one type of immune cell and are
all clones of a single parent cell. Given (almost) any
substance, it is possible to create monoclonal antibodies that
specifically bind to that substance; they can then serve to
detect or purify that substance. This has become an important
tool in biochemistry, molecular biology and medicine. When used
as medications, the generic name ends in -mab (see
"Nomenclature of monoclonal antibodies"). ..."

Epidermal growth factor receptor - Wikipedia, the free encyclopedia
<http://en.wikipedia.org/wiki/Epidermal_growth_factor_receptor>


--
Matti Narkia

"Matti Narkia" <mna@mbnet.fi> wrote in message
news:350o135vn8bik845u97j8ofhe8tali16vr@4ax.com...
> On Tue, 10 Apr 2007 20:36:00 GMT, "Peter" <pd_hendrickson@hotmail.com>
> wrote:
>
> >This stared with a lump on the right side of my neck.
> >
> My lump was also in the right side of my neck in 1988.
>
> >Biopsy indicated squamous cell carcinoma.
> >
> I have/had the same cell type. Most of the head and neck cancer are
> squamous cell carcinomas.
> >
> >I just received the results of my most recent biopsy. I have cancer at
the
> >base of my tongue.
> >
> Initially my diagnosis was also base of the tongue cancer, which later
> changed to tonsil cancer, although I think that there was never
> absolute certainty about the location of the primary tumor.
>
> >Tomorrow I go for the checkup from the tonsillectomy and on Friday I go
in
> >to have the chemo
> >
> >port installed. I haven't received copies of the reports yet.
> >
> >Long range, four to six cycles of chemo followed by four to six weeks of
> >radiation therapy and then
> >
> >possibly surgery.
> >
> >45 year old white male smoker
> >
> You better quit smoking before treatments, because smoking reduces
> their efficacy.
>
You're certainly right about that. I'm working on it, only 2 so far today.
trying for none tomorrow.
Peter

> Good luck.
>
>
>
> --
> Matti Narkia

"Matti Narkia" <mna@mbnet.fi> wrote in message
news:at0o13p6vqka068n5vc2fkumom1ksju7i1@4ax.com...
> On Wed, 11 Apr 2007 00:32:04 +0300, Matti Narkia <mna@mbnet.fi> wrote:
>
> >On Tue, 10 Apr 2007 20:36:00 GMT, "Peter" <pd_hendrickson@hotmail.com>
> >wrote:
> >
> >>This stared with a lump on the right side of my neck.
> >>
> >My lump was also in the right side of my neck in 1988.
> >
> >>Biopsy indicated squamous cell carcinoma.
> >>
> >I have/had the same cell type. Most of the head and neck cancer are
> >squamous cell carcinomas.
> >>
> >>I just received the results of my most recent biopsy. I have cancer at
the
> >>base of my tongue.
> >>
> >Initially my diagnosis was also base of the tongue cancer, which later
> >changed to tonsil cancer, although I think that there was never
> >absolute certainty about the location of the primary tumor.
> >
> >>Tomorrow I go for the checkup from the tonsillectomy and on Friday I go
in
> >>to have the chemo
> >>
> >>port installed. I haven't received copies of the reports yet.
> >>
> >>Long range, four to six cycles of chemo followed by four to six weeks of
> >>radiation therapy and then
> >>
> >>possibly surgery.
> >>
> >>45 year old white male smoker
> >>
> >You better quit smoking before treatments, because smoking reduces
> >their efficacy.
> >
> >Good luck.
>
> PS. It probably wouldn't hurt to inquire whether it could be possible
> to include Erbitux into the protocol. Erbitux has just been in the
> news:
>
> Erbitux Increases Overall Survival For Head And Neck Cancer Patients
> 07 Apr 2007
> <http://www.medicalnewstoday.com/healthnews.php?newsid=67313&nfid=crss>
>
> "Erbitux (Cetuximab), a new drug which is used in combination
> with chemotherapy, increases overall survival in patients with
> recurrent and/or metastatic squamous cell carcinoma of the head
> and neck, according to ImClone, the company which introduced
> the drug together with Bristol-Myers Squibb.
>
> A randomized, multi-center clinical trial (first Phase III
> Study), aimed at evaluating the impact of Erbitux treatment in
> combination with platinum-based chemotherapy on over survival
> in matastatic head an neck cancer, has produced "exciting
> results".
>
> The trial results have been submitted for presentation at the
> upcoming American Society of Clinical Oncology Meeting, June
> 2007, in Chicago, USA.
>
> In the USA alone nearly 13,000 people die from head and neck
> cancer each year. Men have twice the risk of developing this
> cancer, compared to women - it most commonly strikes patients
> over 50 years of age. It is estimated that 81,550 Americans
> will be diagnosed with head and neck cancer in 2007.
>
> The trial, known as EXTREME, treated over 400 patients. Half
> were given Erbitux in combination with cisplatin plus 5-
> fluorouracil (5-FU) or carboplatin plus 5-FU, while the other
> half were treated with cisplatin plus 5-FU or carboplatin plus
> 5-FU alone.
>
> Eric Rowinsky, M.D., Chief Medical Officer and Senior Vice
> President of ImClone Systems, said "We are excited by the
> results of this study, as it is the first large, randomized
> clinical trial to examine the impact of Erbitux treatment in
> combination with platinum-based chemotherapy on overall
> survival in metastatic head and neck cancer. Erbitux has
> already demonstrated improved survival when combined with
> radiation in locoregionally advanced head and neck cancer."
>
> Martin Birkhofer, M.D., Vice President, Oncology Global Medical
> Affairs, Bristol-Myers Squibb, said "When ERBITUX was approved
> for head and neck cancer, it was not only hailed as the first
> new treatment for the disease in 45 years, but it was also the
> first drug approved to show a survival benefit in this
> population. Just one year later, this study adds to the growing
> body of clinical evidence with ERBITUX in these patients.""
>
>
> Other Erbitux related links:
>
> Cetuximab - Wikipedia, the free encyclopedia
> <http://en.wikipedia.org/wiki/Cetuximab>
>
> "Cetuximab (marketed under the name Erbitux) is a chimeric
> monoclonal antibody, an EGFR inhibitor, given by intravenous
> injection for treatment of metastatic colorectal cancer and
> head and neck cancer. Cetuximab was discovered by Imclone
> Systems and is distributed in North America by ImClone and
> Bristol-Myers Squibb, while in the rest of the world
> distribution is by Merck KGaA.
>
> Cetuximab faces stiff competition from bevacizumab (Avastin),
> made by Genentech, and potential competition from panitumumab,
> currently under development by Amgen and Abgenix.
>
> Mode of action
>
> Cetuximab is believed to operate by binding to the
> extracellular domain of the epidermal growth factor receptor
> (EGFR) of cancer cells, preventing ligand binding and
> activation of the receptor. This blocks the downstream
> signaling of EGFR resulting in impaired cell growth and
> proliferation.
>
> Clinical uses
>
> Cetuximab is used in metastatic colon cancer and is given
> concurrently with the chemotherapy drug irinotecan
> (Camptosar®), a form of chemotherapy that blocks the effect of
> DNA topoisomerase I, resulting in fatal damage to the DNA of
> affected cells. While there is a medical laboratory test to
> detect if a cancer tumor overexpresses epidermal growth factor
> receptor(EGFR) on its cells surface, this overexpression has
> recently been shown to not have any bearing on whether a
> patient will respond to Cetuximab or not[citation needed].
> Whether this is because the current tests are just not
> sensitive enough to detect EGFR overexpression or because EGFR
> overexpression is not linked to the drugs effectiveness has not
> been established. Cetuximab was approved by the FDA in March
> 2006 after the publication of research performed by Dr J.
> Bonner [1] for use in combination with radiation therapy for
> treating squamous cell carcinoma of the head and neck (SCCHN)
> or as a single agent in patients who have had prior platinum-
> based therapy.
>
> One of the side effects of Cetuximab therapy is the incidence
> of, possibly sever, acne like rash. ...
>
> ERBITUX: Patient Homepage
>
<http://www.erbitux.com/erbitux/erb/p...BV_UseBVCookie
=Yes>
>
> ERBITUX
> <http://www.erbitux.com/erbitux/erb/home/index.jsp?BV_UseBVCookie=Yes>
>
> Erbitux (cetuximab) Information Page - fda.gov
> <http://www.fda.gov/cder/drug/infopage/erbitux/default.htm>
>
> Monoclonal antibodies - Wikipedia, the free encyclopedia
> <http://en.wikipedia.org/wiki/Monoclonal_antibody>
>
> "Monoclonal antibodies (mAb) are antibodies that are identical
> because they were produced by one type of immune cell and are
> all clones of a single parent cell. Given (almost) any
> substance, it is possible to create monoclonal antibodies that
> specifically bind to that substance; they can then serve to
> detect or purify that substance. This has become an important
> tool in biochemistry, molecular biology and medicine. When used
> as medications, the generic name ends in -mab (see
> "Nomenclature of monoclonal antibodies"). ..."
>
> Epidermal growth factor receptor - Wikipedia, the free encyclopedia
> <http://en.wikipedia.org/wiki/Epidermal_growth_factor_receptor>
>
>
> --
> Matti Narkia

Thanks for the info. I will pass it on to my doctor and see what he thinks.
Peter

Peter wrote:

> This stared with a lump on the right side of my neck.
>
> Biopsy indicated squamous cell carcinoma.
>
>
>
> I just received the results of my most recent biopsy. I have cancer at the
> base of my tongue.
>
> Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
> to have the chemo
>
> port installed. I haven't received copies of the reports yet.
>
> Long range, four to six cycles of chemo followed by four to six weeks of
> radiation therapy and then
>
> possibly surgery.
>
>
>
> 45 year old white male smoker
>
> Peter
>
>
Peter: You've been told this before. But, you have to stop smoking. My
dad smoked for 40 yrs. He was told to stop because of his heart. He
hasn't smoked for 5 yrs. He did it cold turkey fashion.

As to your radiation. you may want to ask about Phentenyl lolipops. Your
throat and mouth will get sores on them from the radiation. In the form
of Burns.

My 2 cents
Frank

Matti Narkia wrote:

>
> PS. It probably wouldn't hurt to inquire whether it could be possible
> to include Erbitux into the protocol. Erbitux has just been in the
> news:
>
> Erbitux Increases Overall Survival For Head And Neck Cancer Patients
> 07 Apr 2007
> <http://www.medicalnewstoday.com/healthnews.php?newsid=67313&nfid=crss>
>
> "Erbitux (Cetuximab), a new drug which is used in combination
> with chemotherapy, increases overall survival in patients with
> recurrent and/or metastatic squamous cell carcinoma of the head
> and neck, according to ImClone, the company which introduced
> the drug together with Bristol-Myers Squibb.
>
> A randomized, multi-center clinical trial (first Phase III
> Study), aimed at evaluating the impact of Erbitux treatment in
> combination with platinum-based chemotherapy on over survival
> in matastatic head an neck cancer, has produced "exciting
> results".
>
> The trial results have been submitted for presentation at the
> upcoming American Society of Clinical Oncology Meeting, June
> 2007, in Chicago, USA.
>
> In the USA alone nearly 13,000 people die from head and neck
> cancer each year. Men have twice the risk of developing this
> cancer, compared to women - it most commonly strikes patients
> over 50 years of age. It is estimated that 81,550 Americans
> will be diagnosed with head and neck cancer in 2007.
>
> The trial, known as EXTREME, treated over 400 patients. Half
> were given Erbitux in combination with cisplatin plus 5-
> fluorouracil (5-FU) or carboplatin plus 5-FU, while the other
> half were treated with cisplatin plus 5-FU or carboplatin plus
> 5-FU alone.
>
> Eric Rowinsky, M.D., Chief Medical Officer and Senior Vice
> President of ImClone Systems, said "We are excited by the
> results of this study, as it is the first large, randomized
> clinical trial to examine the impact of Erbitux treatment in
> combination with platinum-based chemotherapy on overall
> survival in metastatic head and neck cancer. Erbitux has
> already demonstrated improved survival when combined with
> radiation in locoregionally advanced head and neck cancer."
>
> Martin Birkhofer, M.D., Vice President, Oncology Global Medical
> Affairs, Bristol-Myers Squibb, said "When ERBITUX was approved
> for head and neck cancer, it was not only hailed as the first
> new treatment for the disease in 45 years, but it was also the
> first drug approved to show a survival benefit in this
> population. Just one year later, this study adds to the growing
> body of clinical evidence with ERBITUX in these patients.""

Looks like this one where they're trying to improve on 2.5 months (from the standard)
by adding Erbitux to a standard.?
J
<http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCR D&vmview=abst_detail_view&confID=40&abstractID=308 77>

Cetuximab in combination with cisplatin or carboplatin and 5-fluorouracil (5-FU) in
the first-line treatment of patients with recurrent and/or metastatic squamous cell
carcinoma of the head and neck (R&M SCCHN) (EXTREME).
Abstract No:5537
Citation:

Journal of Clinical Oncology, 2006 ASCO Annual Meeting Proceedings Part I. Vol 24,
No. 18S (June 20 Supplement), 2006: 5537 Meeting:2006 ASCO Annual Meeting
Author(s):

J. B. Vermorken, R. Mesia, M. E. Vega-Villegas, E. Remenar, R. Hitt, A. Kawecki, S.
Rottey, D. Zabolotnyy, J. Erfan, N. Amellal
Abstract:


Background: The epidermal growth factor receptor (EGFR) is expressed in nearly all
SCCHN and carries a strong prognostic significance, providing the rationale for using
EGFR-targeted agents, such as cetuximab, in this indication.

This study assesses the efficacy and safety of cetuximab in combination with
chemotherapy commonly used in the treatment of R&M SCCHN. Methods:

Patients (pts) were enrolled into this phase III trial from December 2004 to December
2005 and randomized either to Group A: cetuximab (first dose 400 mg/m2 then 250 mg/m2
weekly) plus a maximum of 6 three-weekly cycles of cisplatin (100 mg/m2 IV on day 1)
or carboplatin (AUC 5, day 1) and 5-FU (1000 mg/m2/day continuous infusion for the
first 4 days of each cycle) or to Group B: cisplatin or carboplatin with 5-FU as
before.

Cetuximab was administered until progression or unacceptable toxicity.

Primary endpoint is overall survival time; secondary endpoints are
progression-free-survival, response rate, disease control rate, safety, and Quality
of Life.

It was planned to randomize a total number of 420 pts in order to detect a difference
in improvement in overall survival of 2.5 months.

Results: At the end of the recruitment, 440 pts have been randomized, to date 320 pts
are under treatment, 21 have withdrawn from the study and 99 have completed the
study.

The Data Safety Monitoring Board (DSMB) has performed an independent preplanned
safety analysis from the first 140 pts, 138 pts of whom were treated.

Patients were followed for a minimum of 6 weeks: M/F 122/16, median age 57 years
[range, 38-79], median Karnofsky performance status (KPS) 80 [range, 70-100].

In this safety analysis, there were 14 deaths, none of which were treatment related.

The most frequent drug related grade 3-4 toxicity was mainly represented by
neutropenia, thrombocytopenia and anemia. Conclusions: The DSMB evaluated baseline
and safety data, found no reason to stop the trial and recommended continuation of
the study.

http://www.medscape.com/viewarticle/537132
Targeted Therapies for Patients With Head and Neck Cancer: An Expert Interview

Posted 06/26/2006
Over the past 10 to 15 years, several clinical trials have compared platinum-based
chemoradiotherapy with RT alone. The percentage improvement in survival with the
addition of chemotherapy was 15% to 30%. In solid tumor oncology, such a dramatic
improvement is rare, so this really justifies our use of concurrent chemoradiation
therapy as the standard of care for locally advanced disease. Now, we have a new
potential standard -- cetuximab plus RT, which may further improve response
rates.,quote.

Anyway, there's no mention of lymph nodes for Peter, so hopefully if they get it
right, this won't be of interest to him.
J

Peter wrote:

> This stared with a lump on the right side of my neck.
>
> Biopsy indicated squamous cell carcinoma.
>
> I just received the results of my most recent biopsy. I have cancer at the
> base of my tongue.
>
> Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
> to have the chemo
>
> port installed. I haven't received copies of the reports yet.
>
> Long range, four to six cycles of chemo followed by four to six weeks of
> radiation therapy and then
>
> possibly surgery.
>
> 45 year old white male smoker
>
> Peter

Hello Peter and welcome.
Tonsils eh? I think we've had someone recently who may be at ACOR.
Each head and neck patient seems somewhat different.

I wish you the best with your treatments.

Whle under treatment, you may feel less like typing (replies to each person
here and/or wading through other posts to get to ones of interest to you) and
more receiving.
Many of the head and neck patients (here) also join the ACOR mail list.
They'll no doubt have many tips for you there.
http://listserv.acor.org/archives/head-neck-onc.html
Click on "join" there and follow the instructions.
They have had technical difficulties, so if you get an error or don't hear
within 24 hours,
send an email to the address at the top of that page. OK?

Please let us know how it's going (ie keep in touch as you are able).
Best,
J

It's a really crap club to be in. Get sorted and join a golf club of
something more fun.

Good Luck!

Ian

Peter wrote:
> This stared with a lump on the right side of my neck.
>
> Biopsy indicated squamous cell carcinoma.
>
>
>
> I just received the results of my most recent biopsy. I have cancer at the
> base of my tongue.
>
> Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
> to have the chemo
>
> port installed. I haven't received copies of the reports yet.
>
> Long range, four to six cycles of chemo followed by four to six weeks of
> radiation therapy and then
>
> possibly surgery.
>
>
>
> 45 year old white male smoker
>
> Peter
>
>

If you can, join the ACOR Head & Neck list serve. You will get some
valuable information there and super support.

Good luck.

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

betsyb wrote:
> BetsyB
>
>
>
> "Peter" <pd_hendrickson@hotmail.com> wrote in message
> news:QySSh.6553$ya1.1686@news02.roc.ny...
>> This stared with a lump on the right side of my neck.
>>
>> Biopsy indicated squamous cell carcinoma.
>>
>>
>>
>> I just received the results of my most recent biopsy. I have cancer at the
>> base of my tongue.
>>
>> Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
>> to have the chemo
>>
>> port installed. I haven't received copies of the reports yet.
>>
>> Long range, four to six cycles of chemo followed by four to six weeks of
>> radiation therapy and then
>>
>> possibly surgery.
>>
>>
>>
>> 45 year old white male smoker
>>
>> Peter
>>
> Welcome to the club. You could have just stopped by for a chat instead of
> going to all this trouble?
> I am sorry for what brought you here. But we all came for information and
> this is the place to get it.
> Janet Wilder had tongue cancer and is recovering nicely. I will let her tell
> you the whats and wheres.
> Where do you live might be a good start?
> Take care and post as often as you like.
>
> BetsyB
>
>
Actually his cancer is closer to ipunty's. His was on the base of the
tongue and he had chemo and rads. Mine was on the side of the tongue and
was resected. I had no chemo, just rads.

If you are not at a major cancer center, I strongly suggest you find one
for the radiation. The side effects are awful and you need to be in a
place where you will have a support team to deal with them.

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

Frank Sharkey wrote:
> Peter wrote:
>
>> This stared with a lump on the right side of my neck.
>>
>> Biopsy indicated squamous cell carcinoma.
>>
>>
>>
>> I just received the results of my most recent biopsy. I have cancer at
>> the
>> base of my tongue.
>>
>> Tomorrow I go for the checkup from the tonsillectomy and on Friday I
>> go in
>> to have the chemo
>>
>> port installed. I haven't received copies of the reports yet.
>>
>> Long range, four to six cycles of chemo followed by four to six weeks of
>> radiation therapy and then
>>
>> possibly surgery.
>>
>>
>>
>> 45 year old white male smoker
>>
>> Peter
>>
>>
> Peter: You've been told this before. But, you have to stop smoking. My
> dad smoked for 40 yrs. He was told to stop because of his heart. He
> hasn't smoked for 5 yrs. He did it cold turkey fashion.
>
> As to your radiation. you may want to ask about Phentenyl lolipops. Your
> throat and mouth will get sores on them from the radiation. In the form
> of Burns.
>
> My 2 cents
> Frank

They don't like to give H&N patients anything with too much sugar. I was
given the patches (which didn't work). A lollipop would have been sheer
torture to me. My mouth is still sore in places and it's been over 6
months since the last radiation treatment.

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

Janet Wilder wrote:
> Frank Sharkey wrote:
>
>> Peter wrote:
>>
>>> This stared with a lump on the right side of my neck.
>>>
>>> Biopsy indicated squamous cell carcinoma.
>>>
>>>
>>>
>>> I just received the results of my most recent biopsy. I have cancer
>>> at the
>>> base of my tongue.
>>>
>>> Tomorrow I go for the checkup from the tonsillectomy and on Friday I
>>> go in
>>> to have the chemo
>>>
>>> port installed. I haven't received copies of the reports yet.
>>>
>>> Long range, four to six cycles of chemo followed by four to six weeks of
>>> radiation therapy and then
>>>
>>> possibly surgery.
>>>
>>>
>>>
>>> 45 year old white male smoker
>>>
>>> Peter
>>>
>>>
>> Peter: You've been told this before. But, you have to stop smoking. My
>> dad smoked for 40 yrs. He was told to stop because of his heart. He
>> hasn't smoked for 5 yrs. He did it cold turkey fashion.
>>
>> As to your radiation. you may want to ask about Phentenyl lolipops.
>> Your throat and mouth will get sores on them from the radiation. In
>> the form of Burns.
>>
>> My 2 cents
>> Frank
>
>
> They don't like to give H&N patients anything with too much sugar. I was
> given the patches (which didn't work). A lollipop would have been sheer
> torture to me. My mouth is still sore in places and it's been over 6
> months since the last radiation treatment.
>
Sugar free lolipops.
Frank

Peter wrote :

"This stared with a lump on the right side of my neck. Biopsy indicated
squamous cell carcinoma.

I just received the results of my most recent biopsy. I have cancer at the
base of my tongue.

Tomorrow I go for the checkup from the tonsillectomy and on Friday I go in
to have the chemo port installed. I haven't received copies of the reports
yet.

Long range, four to six cycles of chemo followed by four to six weeks of
radiation therapy and then possibly surgery.

45 year old white male smoker"

Peter,

Indeed, welcome to the club ! I also have a squamous cell carcinoma in the
lower part of my tongue. I've had two 4-day sessions of 5FU, CISPlatin, and
Taxotere. Now I've completed 17 of 25 200-rad general radiation sessions.
Two weeks from now I should be moving on to have multiple ct scans and then
3D conformal mapping RT where 200 rads per session will be (I hope) tightly
focused inside the tumor. And I'm getting once a week CarboPlatin now.

I've learned some very valuable things from this group, and from :

sci.med.diseases.cancer

and from the ACOR Head and Neck Cancer ListServ and archives which J and
Janet Wilder and other so enthusiastically recommend.

I have learned the problems I am dealing with : weight loss, loss of
appetite and taste, food ... even water ... all tasting like bloody-salty
crap, lack of energy, are very common in this type of cancer although your
experience may vary.

Again, welcome, and the most practical help I can think of :

1. to encourage you to get the recipe for the bicarbonate of soda (or baking
soda) mouthwash/rinse from Janet Wilder's previous posts. I have been
experimenting with a "stronger brew" of that mouthwash where I put 1 heaping
tablespoon of bicarb, one half teaspoon of salt in only half-a-liter of
water and add in a half teaspoon of Biotene mouthrinse. Seems to work for
me.

2. to get a crock pot to cook fish and chicken and whatever very slowly so
it ends up being very soft.

3. get a dental consultation before radiation since any teeth problems
during/after RT may be catastrophic. get any problem teeth out four or five
weeks before radiation therapy.

best wishes, Uncle Sally ... 63 year old expat mutant poet in northern
Thailand

"Frank Sharkey" <sharkeyfamily@adelphia.net> wrote in message
news:b_adnZ8jJ6WUgIHbnZ2dnUVZ_tqnnZ2d@adelphia.com ...
> Peter wrote:
>
> > This stared with a lump on the right side of my neck.
> >
> > Biopsy indicated squamous cell carcinoma.
> >
> >
> >
> > I just received the results of my most recent biopsy. I have cancer at
the
> > base of my tongue.
> >
> > Tomorrow I go for the checkup from the tonsillectomy and on Friday I go
in
> > to have the chemo
> >
> > port installed. I haven't received copies of the reports yet.
> >
> > Long range, four to six cycles of chemo followed by four to six weeks of
> > radiation therapy and then
> >
> > possibly surgery.
> >
> >
> >
> > 45 year old white male smoker
> >
> > Peter
> >
> >
> Peter: You've been told this before. But, you have to stop smoking. My
> dad smoked for 40 yrs. He was told to stop because of his heart. He
> hasn't smoked for 5 yrs. He did it cold turkey fashion.
>
> As to your radiation. you may want to ask about Phentenyl lolipops. Your
> throat and mouth will get sores on them from the radiation. In the form
> of Burns.
>
> My 2 cents
> Frank

Thanks for the advice. I'll look into the lolipops.
Peter

Frank Sharkey wrote:
> Janet Wilder wrote:

>> They don't like to give H&N patients anything with too much sugar. I
>> was given the patches (which didn't work). A lollipop would have been
>> sheer torture to me. My mouth is still sore in places and it's been
>> over 6 months since the last radiation treatment.
>>
> Sugar free lolipops.

H&N radiation patients have almost no saliva and no taste buds. A
lollipop would be impossible. Thanks for the suggestion anyway, but
until one experiences the side-effects of H&N radiation, one has no
concept of it. It is impossible to describe to someone who has not
undergone it.

Lots of nice folks sent me recipes for smoothies and creamy soups that
were supposedly easy to swallow. When one doesn't taste anything, has a
burnt throat, tongue, gums and mouth and no saliva, nothing is easy to
swallow. Cold or hot causes severe pain. Lack of taste buds make
everything taste like nothing. Even now, months after the taste buds
have regenerated, I have trouble imagining what it was like and I lived
through it.


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

Peter wrote:
> "Frank Sharkey" <sharkeyfamily@adelphia.net> wrote in message

>>
>> As to your radiation. you may want to ask about Phentenyl lolipops. Your
>> throat and mouth will get sores on them from the radiation. In the form
>> of Burns.
>>
>> My 2 cents
>> Frank
>
> Thanks for the advice. I'll look into the lolipops.
> Peter
>
>
The radiation team should give you some prescriptions for swishes that
will help with the pain in your mouth. Ulcer Ease is one that does not
need a prescription. Sali-Cept does. There are other swishes that
contain narcotics. You most probably won't be able to suck on a
lollipop, though Frank means well with his advice.

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

"Janet Wilder" <kelliepoodle@yahoo.com> wrote in message
news:461eafce$0$25848$c3e8da3@news.astraweb.com...
> Frank Sharkey wrote:
>> Janet Wilder wrote:
>
>>> They don't like to give H&N patients anything with too much sugar. I was
>>> given the patches (which didn't work). A lollipop would have been sheer
>>> torture to me. My mouth is still sore in places and it's been over 6
>>> months since the last radiation treatment.
>>>
>> Sugar free lolipops.
>
> H&N radiation patients have almost no saliva and no taste buds. A lollipop
> would be impossible. Thanks for the suggestion anyway, but until one
> experiences the side-effects of H&N radiation, one has no concept of it.
> It is impossible to describe to someone who has not undergone it.

Most patients who have modern radotherapy maintain perfectly good salivary
function and get their taste buds back, Janet.

>
> Lots of nice folks sent me recipes for smoothies and creamy soups that
> were supposedly easy to swallow. When one doesn't taste anything, has a
> burnt throat, tongue, gums and mouth and no saliva, nothing is easy to
> swallow. Cold or hot causes severe pain. Lack of taste buds make
> everything taste like nothing. Even now, months after the taste buds have
> regenerated, I have trouble imagining what it was like and I lived through
> it.
>
>
> --
> Janet Wilder
> Bad spelling. Bad punctuation
> Good Friends. Good Life

On Fri, 13 Apr 2007 05:16:11 GMT, "Steph" <steph@vancouvers.island>
wrote:

>
>"Janet Wilder" <kelliepoodle@yahoo.com> wrote in message
>news:461eafce$0$25848$c3e8da3@news.astraweb.com.. .
>> Frank Sharkey wrote:
>>> Janet Wilder wrote:
>>
>>>> They don't like to give H&N patients anything with too much sugar. I was
>>>> given the patches (which didn't work). A lollipop would have been sheer
>>>> torture to me. My mouth is still sore in places and it's been over 6
>>>> months since the last radiation treatment.
>>>>
>>> Sugar free lolipops.
>>
>> H&N radiation patients have almost no saliva and no taste buds. A lollipop
>> would be impossible. Thanks for the suggestion anyway, but until one
>> experiences the side-effects of H&N radiation, one has no concept of it.
>> It is impossible to describe to someone who has not undergone it.
>
>Most patients who have modern radotherapy maintain perfectly good salivary
>function and get their taste buds back, Janet.
>
Yes, I had chemoradiation of mouth, throat and neck four years ago, my
salivary function is quite satisfactory and my taste buds seem to work
as well as before radiation.


--
Matti Narkia

Steph wrote:

>
> Most patients who have modern radotherapy maintain perfectly good salivary
> function and get their taste buds back, Janet.
>

Yes, Steph, they do. I've gotten my taste buds back and most of my
saliva, but the post was about using a drug in lollipop form during
treatment. That wouldn't work. Trust me, I've been there.

Janet

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

Janet Wilder wrote :

> Steph wrote:

> Most patients who have modern radotherapy maintain perfectly
good salivary
> function and get their taste buds back, Janet.

"Yes, Steph, they do. I've gotten my taste buds back and most of my
saliva, but the post was about using a drug in lollipop form during
treatment. That wouldn't work. Trust me, I've been there."

I certainly hope I get my sense of taste back someday ! Right now even
water tastes "repulsively" oily and salty. And I've only had 3400 rads so
far.

I wonder if there is any medical or scientific basis for Steph's opinion.

best, Uncle Sally

Uncle Sally wrote:

> > Steph wrote:
>
> > Most patients who have modern radotherapy maintain perfectly
> > good salivary function and get their taste buds back, Janet.
>
>
> I certainly hope I get my sense of taste back someday ! Right now even
> water tastes "repulsively" oily and salty. And I've only had 3400 rads so
> far.
>
> I wonder if there is any medical or scientific basis for Steph's opinion.

20 (or more) years of clinical experience, in two countries.
J

Uncle Sally wrote:

>
> I certainly hope I get my sense of taste back someday ! Right now even
> water tastes "repulsively" oily and salty. And I've only had 3400 rads so
> far.

If you are like me, wait a little while. The water will taste like
nothing. My taste buds went strange on me. For a while water tasted like
skim milk. It took about two months for taste to start coming back. At
first I was only able to taste things on the first bite. Then little by
little they all came back.

I also found that certain textures of food were repulsive even if they
had no taste. Chicken, no matter how it was prepared felt as though it
was made of sand---even when I pulverized it. It took a while before I
could eat chicken at all.

Sweet was the last sensation to return. I was most afraid of not ever
being able to taste chocolate. That didn't happen but I'm not as crazy
about sweets as I once was.

There are still times when stuff doesn't taste quite right. Last week I
threw away some perfectly good home made chicken salad because it tasted
like it had gone off. DH had just eaten some and when he saw that I'd
thrown out a bunch of it told me it was delicious and there was nothing
wrong with it.
>
> I wonder if there is any medical or scientific basis for Steph's opinion.
>

I'll let Steph answer that, but the people I've met here and on the ACOR
list serve generally regain their taste buds. The time differs with
individuals. I don't think you will be up to the Thai stuff for a
while.<g> I'm barely tolerant of black pepper and my ENT says that it
will take a long time for my tongue and mouth to lose the sensitivity to
spicy foods.

Good luck with the treatments. I'm still around for emails, if you need
me and I'm keeping you in my prayers.

Hugs,
Janet


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

Janet Wilder wrote:
> Peter wrote:
>
>> "Frank Sharkey" <sharkeyfamily@adelphia.net> wrote in message
>
>
>>>
>>> As to your radiation. you may want to ask about Phentenyl lolipops. Your
>>> throat and mouth will get sores on them from the radiation. In the form
>>> of Burns.
>>>
>>> My 2 cents
>>> Frank
>>
>>
>> Thanks for the advice. I'll look into the lolipops.
>> Peter
>>
>>
> The radiation team should give you some prescriptions for swishes that
> will help with the pain in your mouth. Ulcer Ease is one that does not
> need a prescription. Sali-Cept does. There are other swishes that
> contain narcotics. You most probably won't be able to suck on a
> lollipop, though Frank means well with his advice.
>
I used the lolipops laced with thentenyl right after haing my surgery
removing my rectal organs and muscles. My stomack was soo wound up from
the surgery I could eat of swallow anything for a week of=r do. But the
lolipops kepr the pain in check until I could get on a morphine drip @
home.
Frank

"Uncle Sally" <uncleSally@auldUncleSally.com> wrote in message
news:HjOTh.294950$Wg6.278248@fe07.news.easynews.co m...
> Janet Wilder wrote :
>
> > Steph wrote:
>
> > Most patients who have modern radotherapy maintain perfectly
> good salivary
> > function and get their taste buds back, Janet.
>
> "Yes, Steph, they do. I've gotten my taste buds back and most of my
> saliva, but the post was about using a drug in lollipop form during
> treatment. That wouldn't work. Trust me, I've been there."
>
> I certainly hope I get my sense of taste back someday ! Right now even
> water tastes "repulsively" oily and salty. And I've only had 3400 rads so
> far.
>
> I wonder if there is any medical or scientific basis for Steph's opinion.
>


Yes, there is, and a lot of experience.

Janet Wilder wrote:
> Steph wrote:
>
>>
>> Most patients who have modern radotherapy maintain perfectly good
>> salivary function and get their taste buds back, Janet.
>>
>
> Yes, Steph, they do. I've gotten my taste buds back and most of my
> saliva, but the post was about using a drug in lollipop form during
> treatment. That wouldn't work. Trust me, I've been there.
>
> Janet
>
Janet,

For what it's worth, during my radiation treatment, my doc insisted that
I try and eat (something about muscles in my throat atrophying if not
used) and the only way I could tolerate swallowing was by using a fairly
high dose of the lollipop. I wouldn't suck on it as that was somewhat
painful. I would just leave it in my mouth, on the inside of my cheek
and let it dissolve for about 30 minutes before I would try and take
some food. I once tried eating without the lollipop and swallowing was
so painful that I always used it after that while undergoing radiation.

David Azose

David Azose wrote:
> Janet Wilder wrote:
>> Steph wrote:
>>
>>>
>>> Most patients who have modern radotherapy maintain perfectly good
>>> salivary function and get their taste buds back, Janet.
>>>
>>
>> Yes, Steph, they do. I've gotten my taste buds back and most of my
>> saliva, but the post was about using a drug in lollipop form during
>> treatment. That wouldn't work. Trust me, I've been there.
>>
>> Janet
>>
> Janet,
>
> For what it's worth, during my radiation treatment, my doc insisted that
> I try and eat (something about muscles in my throat atrophying if not
> used) and the only way I could tolerate swallowing was by using a fairly
> high dose of the lollipop. I wouldn't suck on it as that was somewhat
> painful. I would just leave it in my mouth, on the inside of my cheek
> and let it dissolve for about 30 minutes before I would try and take
> some food. I once tried eating without the lollipop and swallowing was
> so painful that I always used it after that while undergoing radiation.
>
> David Azose


I guess I just thought about sucking on them. Just the idea of putting
something hard into my mouth brought back painful memories. I was given
pain killers in liquid form to swish and spit or swish and swallow to
kill the pain in my mouth and throat. Even with the topical pain killers
and with the swallowed pain killers, the most I could manage was water
and Hi-protien Boost.

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