Re: Treatment

[Guest guest]

e,

You might want to at least talk with a couple of surgeons. Ask them

specifics about their practice, how many surgeries they have done, how many

they do in a month, what types of problems have they run into, how did they

handle them...if a dr. will take the time to answer those questions and the

amount of surgeries he has done are high, then you are probably in very good

hands.

A friend of mine had the surgery about 3 years ago now, and if you look at

her you can not tell she ever had it. Things have improved from when your

mom had her surgery...that was about 20 years ago wasn't it? e, what

your mom went through was absolutely horrible, and it doesn't mean that you

are following in her footsteps. There is so much more information available

to all of us now, and you are way ahead of the game because you have been

reading and educating yourself, you have also found lots of people who will

be here for you, no matter what you decide, to go through this with you.

Your not alone in any of this.

I know for myself I have been keeping you in all of my prayers and you are

in my thoughts so very much lately. My wish for you is that you will be

feeling better as soon as possible. I do hope too that you will beable to

find another dr., this one doesn't seem to be someone you can count on to be

honest with you, or to have any consideration for what you are going through

now, or why you have the fears you have because of all that your mom went

through.

*HUGZ* for you e.

Jody

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Elaine,

I have been on both PTU and Tapazole. This past weekend I was running a

high fever on PTU. THey took my white blood cell count and told me I

couldn't take the stuff. My doctor has always wanted me to have surgery. I

am not to hip on it though. My mother had a very bad experience with it. I

know that it has probably improved but I am too scared to be cut on. So I

guess I will just be radioactive instead! I know this is very vain but my

mother looked like she had her throat slashed and I can't help thinking

about that.

e

treatment

> e,

> I may have missed some posts, but have you been on both

> ATD's? It's extremely rare to react to both PTU and

> tapazole. If you get a chance, go to www.iThyroid.com and

> read

> the quickly written article I wrote about Conventional

> Treatment. It's not

> eloquent, but the info is up-to-date and accurate. I had

> cited my references, but didn't include them. I can

> provide them if you want to follow up on anything. Now that

> there are diagnostic tools to help the surgeon pinpoint the

> laryngeal nerve, surgery is much safer.

> However, there are other options such as ionic inhibitor

> drugs such as perchlorate that are being used with success.

> They're included in the iThyroid article. I realize your

> symptoms preclude your dawdling on this, but you need to be

> certain that what you decide on is best for you

>

>

>

> ------------------------------------------------------------------------

> Do you love your Mother?

> Click Here

> http://click./1/3652/3/_/585824/_/956678584/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

>

>

>

[Guest guest]

> e, I had surgery and you would never know it. I had half of

my

> thyroid removed.

> It was fine for about thirty years. There are good surgeons around.

> Don't be afraid of surgery.

is correct, I know a lady who had surgery a few years ago and

the scar is hardly visible if you don't know what to look for. The

thing is to make sure the surgeon has done the procedure a lot (as

opposed to having only done it a couple of times in the last year or

so).

Jean

[Guest guest]

e, I had surgery and you would never know it. I had half of my

thyroid removed.

It was fine for about thirty years. There are good surgeons around.

Don't be afraid of surgery.

[Guest guest]

Dear e,

The people in this group have given you a great deal of support and

information which will help you to make a decision about which

treatment to have. We cannot make your decision for you, however,

what you need is even more information and support from a physician

who is able to help you in person. So, if you don't mind: let's get

back to the doctor who is " treating " you. ly, he sounds like a

thug. He cannot, by law, prevent you from seeing another doctor. He

cannot withhold your medical records and test results. He should not

treat you like a child or an underling.

Demand that you be allowed to change endocrinologists. Make a formal

complaint about this guy to the group he is working for. This alone

will probably make you feel much better physically and emotionally.

Then, find some sources of information on the surgical option. There

were some good Swedish studies which are somewhere on the Web. Find

and talk to a surgeon who does LOTS of thyroidectomies and is willing

to share his success rate with you. Find out which endo in your

group has a good track record in dealing with patients and getting

them well.

If RAI is your choice of treatment, at least find an endo who is good

at calculating dosage. This is, evidently, not an exact science and

many people are overdosed or underdosed. You will then have to find

someone who is good at determining replacement dosage afterwards, as

you will most likely become hypothyroid and need a good physician-

manager to help you feel all right.

Good luck.

Red

[Guest guest]

Dear e,

The people in this group have given you a great deal of support and

information which will help you to make a decision about which

treatment to have. We cannot make your decision for you, however,

what you need is even more information and support from a physician

who is able to help you in person. So, if you don't mind: let's get

back to the doctor who is " treating " you. ly, he sounds like a

thug. He cannot, by law, prevent you from seeing another doctor. He

cannot withhold your medical records and test results. He should not

treat you like a child or an underling.

Demand that you be allowed to change endocrinologists. Make a formal

complaint about this guy to the group he is working for. This alone

will probably make you feel much better physically and emotionally.

Then, find some sources of information on the surgical option. There

were some good Swedish studies which are somewhere on the Web. Find

and talk to a surgeon who does LOTS of thyroidectomies and is willing

to share his success rate with you. Find out which endo in your

group has a good track record in dealing with patients and getting

them well.

If RAI is your choice of treatment, at least find an endo who is good

at calculating dosage. This is, evidently, not an exact science and

many people are overdosed or underdosed. You will then have to find

someone who is good at determining replacement dosage afterwards, as

you will most likely become hypothyroid and need a good physician-

manager to help you feel all right.

Good luck.

Red

[Guest guest]

Hi ,

This is the other Barbara from South Australia. Just want to add a note for

Barbara in WA that the Benadryl sold in Australia is not the same drug as

that sold in the US. The one in Australia is a cough medicine with alcohol

in it and it does not have the same properties at all. I have investigated

this through a chemist. The drug in the US Benadryl is banned in Australia

and in most European countries for reasons unknown to me. I wish all the

drug companies would get together and keep to the same names, it would make

things a lot easier and safer for everyone.

Cheers

Barbara

South Australia

----Original Message Follows----

Reply-To: urticariaegroups

To: " Barbara Holmes "

CC: urticariaegroups

Subject: Re: Treatment

Date: Wed, 07 Jun 2000 08:02:14 -0500

Barbara,

This condition seems to affect people at all points in the age spectrum.

Had you ever had hives at any other time in your life? Are you on any

other medications? Hives can be caused by many things, including allergies,

medications, and illness. What medical tests have you had run? And,

what is in your " cocktail " of medicines that you take to control your

hives. I've tried everything, but the only thing that really helps me

is benadryl.

--

Thom

thomcat57@...

___________________________________________________________________

To get your own FREE ZDNet Onebox - FREE voicemail, email, and fax,

all in one place - sign up today at http://www.zdnetonebox.com

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[Guest guest]

Friend,

Gleevec targets a single gene, and seems to work well against GIST

and CML (leukemia).

http://health.discovery.com/expert/yale/viewsnews/gleevec.html

Unfortunately cancers such as lung and colon are a bit more

complicated, apparently having multiple (as of now unidentified)

genetic pathways which would have to be targeted before a " cure "

could be found.

There are clinical trials out there now which attempt to combine

various cancer vaccines with 5-FU/LV chemo for stage II/III colon

cancer,

*********************************************************************

example - see

Protocol ID: INTRACEL-ASI-2002

http://www.nci.nih.gov/clinicaltrials/view_clinicaltrials.aspx?

version=healthprofessional & cdrid=68597

(COPY link into browser as Yahoo splits long links!)

**********************************************************************

but I don't think anyone has the expectation that vaccines NOW in

trials will dramatically improve the cure rate for any stage of CC.

The literature I read seemed to indicate they hoped for maybe at best

a 5-10% absolute increase in cures from the new biologic therapies -

i.e. maybe curing 65-70% of stage IIIs instead of the current 50%

with surgery alone and 60% with surgery plus 5-FU/LV chemo. No

gleevecs in the CC world that I'm aware of....yet!

Best,

[Guest guest]

Dear ,

Thank you for the information. In the meantime I got in touch with

Novartis who also said that Gleevec is not for CC. The reason you

have explained well.

My mother is now on a chemo theraphy plan of 5 FU/LV. However the

oncologist mentioned that after completion of 3 courses he would

again carry out a CT/ US scan and then decide on whether a further 3

course would be required.

I may be naive in asking this. But when we say 50% or 60% cure of

stage II with surgery and Chemotheraphy. Does it mean that 50 to 60 %

of the cases has been cured completly of the decease. Or is it that

60% of decease has been cured from a person on an average.

Warm Regards

Arun

Friend,

Gleevec targets a single gene, and seems to work well against GIST

and CML (leukemia).

http://health.discovery.com/expert/yale/viewsnews/gleevec.html

Unfortunately cancers such as lung and colon are a bit more

complicated, apparently having multiple (as of now unidentified)

genetic pathways which would have to be targeted before a " cure "

could be found.

There are clinical trials out there now which attempt to combine

various cancer vaccines with 5-FU/LV chemo for stage II/III colon

cancer,

*********************************************************************

example - see

Protocol ID: INTRACEL-ASI-2002

http://www.nci.nih.gov/clinicaltrials/view_clinicaltrials.aspx?

version=healthprofessional & cdrid=68597

(COPY link into browser as Yahoo splits long links!)

*********************************************************************

but I don't think anyone has the expectation that vaccines NOW in

trials will dramatically improve the cure rate for any stage of CC.

The literature I read seemed to indicate they hoped for maybe at best

a 5-10% absolute increase in cures from the new biologic therapies -

i.e. maybe curing 65-70% of stage IIIs instead of the current 50%

with surgery alone and 60% with surgery plus 5-FU/LV chemo. No

gleevecs in the CC world that I'm aware of....yet!

Best,

[Guest guest]

Hi Arun,

> I may be naive in asking this. But when we say 50% or 60% cure of

> stage II with surgery and Chemotheraphy. Does it mean that 50 to 60

%

> of the cases has been cured completly of the decease. Or is it that

> 60% of decease has been cured from a person on an average.

Not at all, this is an important point worth discussing further.

For stage II or III colon cancer, the goal of ALL therapy is CURE.

Each patient is either CURED or NOT CURED, depending upon whether or

not he/she has experienced recurrence 5 years post diagnosis. You

CANNOT be " 60% cured " by having 60% of your disease eliminated - the

only way you will be cured is if 100% of your disease is eliminated.

The interpretation of " a 60 to 65% cure rate for stage III with 5-

FU/LV chemo " is the following:

If you have 100 stage III colon cancer patients and all of them have

completely resective surgery (all disease surgically removed), then

50 of them are cured outright by the surgery. They don't need chemo

or any other treatment. 35-40 of the patients will NOT be cured even

if they take 5-FU/LV chemo following their colon resections (not

curable with current technology). And 10-15 are not cured by the

colon resection alone, but will be cured if they take 5-FU/LV chemo

following the resection. What this is saying is, only 10-15 out of

100 patients benefit from the chemo, but since no one can identify

these patients beforehand, all 100 have to take the chemo.

So....50 patients are cured outright by surgery, and 10-15 more are

cured because they had chemo, meaning a total of 60 to 65 patients

are cured overall. That's where the 60-65% stats come from.

There is considerable controversy over whether chemo benefits stage

II patients at all. On the one hand, there are studies such as the

following which show stage II's get NO BENEFIT for 5-FU/LV chemo

**********************************************************************

http://www.asco.org/asco/ascoMainConstructor/1,1003,_12-002324-00_29-

00A-00_18-002001-00_19-00488,00.asp

(have to COPY link into browser, as Yahoo splits links which are too

long and slop into a second line!)

[snip]

Background: Adjuvant chemotherapy for stage II colon cancer remains

controversial because clinical trials have been underpowered to

demonstrate significant survival benefit. However, clinicians may

extrapolate from stage III colon cancer, assume treatment confers a

small benefit and therefore, recommend it.

Objective: To examine use of adjuvant chemotherapy for stage II colon

cancer and compare survival of treated and untreated patients in real

world practice.

3,725 resected stage II colon cancer patients aged 65-74 and

diagnosed in 1991-96 was identified from SEER. Utilization of

adjuvant chemotherapy was ascertained from Medicare claims. Survival

was compared for treated and untreated patients.

For the 2,478 patients with no major comorbidity, 34% received

chemotherapy and the 5-year survival was 77% for treated and 78% for

untreated patients

Among 448 patients with a poor prognostic feature (T4 tumor,

obstruction, perforation), 38% received chemotherapy and 5-year

survival was 62% for treated and 60% for untreated patients

**********************************************************************

On the other hand, some oncologists speculate there MAY be a small

benefit for stage II's with certain " poor prognostic "

characteristics, such as tumors which have broken thru the colon wall

or somehow gotten tumor cells loose in the abdomen (peritoneal space):

**********************************************************************

Peritoneal Involvement in Stage II Colon Cancer

http://www.medscape.com/viewarticle/447854

[snip]

Several studies have shown a benefit for adjuvant therapy for

patients with stage III colon cancer but not for patients with stage

II disease.[5,6] This failure to demonstrate a benefit of adjuvant

therapy for patients with stage II colon cancer may be due to our

inability to distinguish a subset of patients with a poor prognosis.

However, if we could identify factors within this group that are

associated with a poor outcome, we could target such patients for

adjuvant therapies while avoiding chemotherapy for patients without

poor prognostic variables.

[snip]

Peritoneal involvement with tumor cells free in the peritoneal space

in stage II colon cancer is a powerful indicator of outcome; patients

have a survival similar to that for patients with stage III disease.

**********************************************************************

You wrote:

<<My mother is now on a chemo theraphy plan of 5 FU/LV. However the

oncologist mentioned that after completion of 3 courses he would

again carry out a CT/ US scan and then decide on whether a further 3

course would be required>>

IF your Mom is stage II, this course of action may be motivated by

the uncertainty of chemo efficacy for this stage (although in a way I

would think once you have started chemo, might as well finish out the

same treatment plan a stage III would have).

On the other hand, if your Mom is stage III, she should be getting 6

months of 5-FU/LV

http://www.nci.nih.gov/cancerinfo/pdq/treatment/colon/healthprofession

al/#Section_69

(COPY link into browser as Yahoo splits long links!)

regardless of " clear " scan results partway through the therapy. If

this isn't the plan, I would encourage you to get a second opinion

from another oncologist about it.

Best,

[Guest guest]

Hi ,

Many thanks for clearing my point on the percentage definition of

cure.

My mother is 58 years old. She had a tumour in the sigmoid colon. A

radical sigmoid colectomy and a primary end to end anastomosis was

done. The resected ends were free. It was unfortunate that the tumour

had slightly perforated the walls of the colon. Because of the

perforation the prognosis short of good as there were possibilities

of contamination of the peritonium though presently there was no

visual or microscopic metastasis (Based on the reports of the Surgeon

& Pathologist).

After 3 weeks of the surgery the oncologist again carried out a US

scan of the chest, abdomen and pelvic. The sonologist mentioned that

though the vital organs appeared normal there were some minor

illdefined thickenings in the adnexal region of the abdomen which

could possible be secondaries or as a result of the surgery. The CEA

test showed a value of 1.92 ng/ml. The oncologist then decided to put

my mother through a plan of chemotheraphy + Immunotheraphy to address

any possibility of contamination.

The drug plan is 5 FU/LV + Vermisol to be repeated in 28 days.

Initially the dosage is 750 mg of 5 FU + 75 mg of LV on the first

three days. (Vermisol 50 mg is also given during these days).

Vermisol 50 mg is further to be given on the 15th, 16th and 17th day.

As part of the Immunotheraphy Levanizole 50 mg was given on the first

3 days. I took a second opinion from another oncologist who also

confirmed to these plans though he had a concern on the dosage. The

oncologist treating my mother had told me that the first dosage has

been kept low as my mother was coming out of a major surgery. And

that the subsequent dosage would be more. He also mentioned that he

would be carrying out a barium anema test after 3 courses in addition

to blood tests and scan to ascertain the status. This would form the

basis on deciding the further course of treatment.

Also the doctor has adviced she be given a capsule each of Fesovit &

Polybion daily for 30 days.

I am praying that local spread if any be addressed by chemotheraphy

and that there be no recurrance. I am providing my mother with diet

including green leafy vegetables & sprouts to give required vitamins

to build her immune system.

Thank you Dave and for your mails & advice.

Best Regards

Arun

<altman23@y...> wrote:

Hi Arun,

I may be naive in asking this. But when we say 50% or 60% cure of

stage II with surgery and Chemotheraphy. Does it mean that 50 to 60

% of the cases has been cured completly of the decease. Or is it that

60% of decease has been cured from a person on an average.

Not at all, this is an important point worth discussing further.

For stage II or III colon cancer, the goal of ALL therapy is CURE.

Each patient is either CURED or NOT CURED, depending upon whether or

not he/she has experienced recurrence 5 years post diagnosis. You

CANNOT be " 60% cured " by having 60% of your disease eliminated - the

only way you will be cured is if 100% of your disease is eliminated.

The interpretation of " a 60 to 65% cure rate for stage III with 5-

FU/LV chemo " is the following:

If you have 100 stage III colon cancer patients and all of them have

completely resective surgery (all disease surgically removed), then

50 of them are cured outright by the surgery. They don't need chemo

or any other treatment. 35-40 of the patients will NOT be cured even

if they take 5-FU/LV chemo following their colon resections (not

curable with current technology). And 10-15 are not cured by the

colon resection alone, but will be cured if they take 5-FU/LV chemo

following the resection. What this is saying is, only 10-15 out of

100 patients benefit from the chemo, but since no one can identify

these patients beforehand, all 100 have to take the chemo.

So....50 patients are cured outright by surgery, and 10-15 more are

cured because they had chemo, meaning a total of 60 to 65 patients

are cured overall. That's where the 60-65% stats come from.

There is considerable controversy over whether chemo benefits stage

II patients at all. On the one hand, there are studies such as the

following which show stage II's get NO BENEFIT for 5-FU/LV chemo

*********************************************************************

http://www.asco.org/asco/ascoMainConstructor/1,1003,_12-002324-00_29-

00A-00_18-002001-00_19-00488,00.asp

(have to COPY link into browser, as Yahoo splits links which are too

long and slop into a second line!)

[snip]

Background: Adjuvant chemotherapy for stage II colon cancer remains

controversial because clinical trials have been underpowered to

demonstrate significant survival benefit. However, clinicians may

extrapolate from stage III colon cancer, assume treatment confers a

small benefit and therefore, recommend it.

Objective: To examine use of adjuvant chemotherapy for stage II colon

cancer and compare survival of treated and untreated patients in real

world practice.

3,725 resected stage II colon cancer patients aged 65-74 and

diagnosed in 1991-96 was identified from SEER. Utilization of

adjuvant chemotherapy was ascertained from Medicare claims. Survival

was compared for treated and untreated patients.

For the 2,478 patients with no major comorbidity, 34% received

chemotherapy and the 5-year survival was 77% for treated and 78% for

untreated patients

Among 448 patients with a poor prognostic feature (T4 tumor,

obstruction, perforation), 38% received chemotherapy and 5-year

survival was 62% for treated and 60% for untreated patients

*********************************************************************

On the other hand, some oncologists speculate there MAY be a small

benefit for stage II's with certain " poor prognostic "

characteristics, such as tumors which have broken thru the colon wall

or somehow gotten tumor cells loose in the abdomen (peritoneal space):

*********************************************************************

Peritoneal Involvement in Stage II Colon Cancer

http://www.medscape.com/viewarticle/447854

[snip]

Several studies have shown a benefit for adjuvant therapy for

patients with stage III colon cancer but not for patients with stage

II disease.[5,6] This failure to demonstrate a benefit of adjuvant

therapy for patients with stage II colon cancer may be due to our

inability to distinguish a subset of patients with a poor prognosis.

However, if we could identify factors within this group that are

associated with a poor outcome, we could target such patients for

adjuvant therapies while avoiding chemotherapy for patients without

poor prognostic variables.

[snip]

Peritoneal involvement with tumor cells free in the peritoneal space

in stage II colon cancer is a powerful indicator of outcome; patients

have a survival similar to that for patients with stage III disease.

**********************************************************************

You wrote:

<<My mother is now on a chemo theraphy plan of 5 FU/LV. However the

oncologist mentioned that after completion of 3 courses he would

again carry out a CT/ US scan and then decide on whether a further 3

course would be required>>

IF your Mom is stage II, this course of action may be motivated by

the uncertainty of chemo efficacy for this stage (although in a way I

would think once you have started chemo, might as well finish out the

same treatment plan a stage III would have).

On the other hand, if your Mom is stage III, she should be getting 6

months of 5-FU/LV

http://www.nci.nih.gov/cancerinfo/pdq/treatment/colon/healthprofession

al/#Section_69

(COPY link into browser as Yahoo splits long links!)

regardless of " clear " scan results partway through the therapy. If

this isn't the plan, I would encourage you to get a second opinion

from another oncologist about it.

Best,