RE: 's Story

May 10, 2002

Hi Pam,

Yes, 's story is sad and scary, but I have to tell you, this woman has a

remarkable attitude. I am trying to get her to join our group. Right now

may not be a good time since it is a struggle for her to read a lot...I am

hoping though.

I do need to stress to ALL, 's eye disease is NOT what WILL happen after

RAI, but it CAN happen. I am talking with another young woman who had RAI

the beginning of April, and her eyes may be going to the extreme of 's

This woman's doctor actually went farther than 's doctor of no

warning that RAI could have an adverse effect on the eyes...both showed

signs of the disease prior to RAI. This young woman's doctor TOLD her that

RAI would HELP her eyes <sigh>.

You know, all of our treatments have pro's and con's to them. And

sometimes, maybe I am too hard on RAI...maybe it is more the doctors who

have lack of knowledge of what CAN happen post RAI, and lack of knowledge in

how to treat hypo, how to continue to monitor antibodies, their overall lack

of knowledge in how to treat post rai may be more at fault than the actual

treatment.

The folks I have met who have had surgery, another permanent option, do not

seem to go anywhere near the problems of post RAIer's. Anyhow, I still will

NEVER EVER change my stance on RAI and how harmful this treatment is,

especially the long term effects, that will usually show up 5-10 years down

the road, by then, doctors will convince people these problems are not

thyroid related, if they were going to have these kind of problems we do

experience 'down the road'...we would have had them shortly after treatment

and that is just a lie on their part, or ignorance.

My mind is full today, I have gotten more e-mails in the last 2 days of

people with post rai problems, more with what is appearing to be severe eye

disease...more stories of incompetent doctors...it is depressing, and maybe

causing me to just not make sense today.

I do hope people will really think long and hard before doing RAI, but in

the end, if they are comfortable with that decision, I truly hope they will

have a successful ending when they get 'down the road'.

Jody

_________________________________________________________________

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May 10, 2002

Hi Pam,

Yes, 's story is sad and scary, but I have to tell you, this woman has a

remarkable attitude. I am trying to get her to join our group. Right now

may not be a good time since it is a struggle for her to read a lot...I am

hoping though.

I do need to stress to ALL, 's eye disease is NOT what WILL happen after

RAI, but it CAN happen. I am talking with another young woman who had RAI

the beginning of April, and her eyes may be going to the extreme of 's

This woman's doctor actually went farther than 's doctor of no

warning that RAI could have an adverse effect on the eyes...both showed

signs of the disease prior to RAI. This young woman's doctor TOLD her that

RAI would HELP her eyes <sigh>.

You know, all of our treatments have pro's and con's to them. And

sometimes, maybe I am too hard on RAI...maybe it is more the doctors who

have lack of knowledge of what CAN happen post RAI, and lack of knowledge in

how to treat hypo, how to continue to monitor antibodies, their overall lack

of knowledge in how to treat post rai may be more at fault than the actual

treatment.

The folks I have met who have had surgery, another permanent option, do not

seem to go anywhere near the problems of post RAIer's. Anyhow, I still will

NEVER EVER change my stance on RAI and how harmful this treatment is,

especially the long term effects, that will usually show up 5-10 years down

the road, by then, doctors will convince people these problems are not

thyroid related, if they were going to have these kind of problems we do

experience 'down the road'...we would have had them shortly after treatment

and that is just a lie on their part, or ignorance.

My mind is full today, I have gotten more e-mails in the last 2 days of

people with post rai problems, more with what is appearing to be severe eye

disease...more stories of incompetent doctors...it is depressing, and maybe

causing me to just not make sense today.

I do hope people will really think long and hard before doing RAI, but in

the end, if they are comfortable with that decision, I truly hope they will

have a successful ending when they get 'down the road'.

Jody

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

May 10, 2002

I think that 50 years from now, people (doctors included) will look back on

RAI and think, " How barbaric " . I hope it happens sooner than that, but in

the meantime, the only thing we can do is help to educate people about their

options and what has worked for us and what hasn't. And to try to warn

people about the dangers we have discovered before it happens to them.

I am so grateful for this list and all the wonderful, supportive,

intelligent people on it. And SO glad I found it before I just went along

with my doctor's orders.

RE: 's Story

Hi Pam,

Yes, 's story is sad and scary, but I have to tell you, this woman has a

remarkable attitude. I am trying to get her to join our group. Right now

may not be a good time since it is a struggle for her to read a lot...I am

hoping though.

I do need to stress to ALL, 's eye disease is NOT what WILL happen after

RAI, but it CAN happen. I am talking with another young woman who had RAI

the beginning of April, and her eyes may be going to the extreme of 's

This woman's doctor actually went farther than 's doctor of no

warning that RAI could have an adverse effect on the eyes...both showed

signs of the disease prior to RAI. This young woman's doctor TOLD her that

RAI would HELP her eyes <sigh>.

You know, all of our treatments have pro's and con's to them. And

sometimes, maybe I am too hard on RAI...maybe it is more the doctors who

have lack of knowledge of what CAN happen post RAI, and lack of knowledge in

how to treat hypo, how to continue to monitor antibodies, their overall lack

of knowledge in how to treat post rai may be more at fault than the actual

treatment.

The folks I have met who have had surgery, another permanent option, do not

seem to go anywhere near the problems of post RAIer's. Anyhow, I still will

NEVER EVER change my stance on RAI and how harmful this treatment is,

especially the long term effects, that will usually show up 5-10 years down

the road, by then, doctors will convince people these problems are not

thyroid related, if they were going to have these kind of problems we do

experience 'down the road'...we would have had them shortly after treatment

and that is just a lie on their part, or ignorance.

My mind is full today, I have gotten more e-mails in the last 2 days of

people with post rai problems, more with what is appearing to be severe eye

disease...more stories of incompetent doctors...it is depressing, and maybe

causing me to just not make sense today.

I do hope people will really think long and hard before doing RAI, but in

the end, if they are comfortable with that decision, I truly hope they will

have a successful ending when they get 'down the road'.

Jody

_________________________________________________________________

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-------------------------------------

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intended to replace expert medical care.

Please consult your doctor before changing or trying new treatments.

----------------------------------------

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of

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----------------------------------------------------------------------------

----------

May 10, 2002

Cheer up Jody!

You are presenting things that are the way they are. You are trying to make

it easier for many of us to face what we are facing, and maybe you are, too,

trying (still) forgive yourself for having RAI. You are a great person!

Your input helps every one of us. I know, the stuff that's discussed and

that you are researching can be extremely disheartening.

I just want to tell you that you have done wonders for me in my knowledge of

Joe's disease and RAI treatment. I would never have found this group of

supporters and wonderful people out here had it NOT been for Joe getting

Grave's and having had RAI treatment. Life sucks sometimes, yes ... yet look

at all of the POSITIVE that can come out of chaos and despair, trouble,

illness, healing.

As you always say, You can " never go back. " I remember back to the turning

point in MY life when I was diagnosed with Type 1 diabetes ... I hated it at

first, but I can honestly say ... I don't not think I would be the person I

am today without having had to deal with it daily! I'm grateful for the

challenge, and I hold steadfast to the belief that if I were not strong

enough, I would never have been given such a challenge! I love my life, and

I truly am grateful too for this list!

Smile Jody! Smile!!!! We love you!!!! The world is such a better place

because you are here... you have made a difference in my life. Thank you

for doing that.

Love and hugs,

Ann

May 11, 2002

I nearly cried whn I read 's story. It makes me feel pretty lucky to have

the doctors I have.

I was amazed last week while watching my son's college baseball game. I was

sitting with his roomate's mother and we were just chatting when she mentioned a

thyroid problem she was having. I asked her more and she told me she also has

Graves. Pretty much the same classic symptoms and a trip to an endo in

Indianapolis. He told her about the three options for treatment but ofcoarse

pushed the RAI. He told her it was the preferred treatment. So she did it last

fall. She is back on Tapazole now and her doc says she may need a second dose.

Her eyes look fine and she said she has never had any problem with them. I

don't think she did any reading or research before the RAI. I just told her I

was planning on avoiding it unless there was no other option. What do you say?

Could not bring myself to say much since it was already done.

L.

's Story

My friend has graciously allowed me to share her story post RAI.

[ 05-09-2002, 06:29 PM: Message edited by: hiroshima ]

--------------------

Age 38. Diagnosed Hashimoto's 1999, turned into Graves with concurrent GO,

10 months Tapazole, RAI Sept 2001, hypo in 2 weeks,DEVASTATING RESULTS TO

EYES. Facing at least 3 surgeries to correct.

GOD IS GOOD ALWAYS!!!!!!!!!!

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

-------------------------------------

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.

----------------------------------------

DISCLAIMER

Advertisments placed on this yahoo groups list does not have the endorsement

of

the listowner. I have no input as to what ads are attached to emails.

--------------------------------------------------------------------------------\

------

May 11, 2002

Hi ,

We were fortunate enough to read 's story, and for a brief 48 hours see

her picture. She had to remove them from the internet because of litigation

she is in, involving this. When the litigation is over, she will share it

all again with us.

As for the woman you sat with, what can you say? Maybe encourage her to do

more research, invite her to the group, if she has access to the

internet...but in the end, it is all her decision and choice. I'm glad she

hasn't had any problems so far, with eyes or otherwise...and I hope if she

chooses to have RAI again, it remains that way. That being said, many many

people do well after RAI especially for the first couple of years before

seeing any problems. If they are real lucky, they have doctors who know how

to keep them out of hypo, and if they are extemely lucky they will have no

eye disease. It is a matter of timing.

I would love to hear from people who, 10 years after rai, still have no

problems no complaints. So far, in my life I have not met any. I worry

too, that the longer they go without problems, then begin seeing problems,

they will be told 'it is not thyroid related' and they believe that. Since,

so far, there are no long term studies released on this, studies that would

maybe expose things problems even we are unaware they exist...it all remains

to be seen.

Jody

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May 11, 2002

Your friend must be an amazing person. I salute her.

's Story

My friend has graciously allowed me to share her story post RAI. I hope

you all will read it, then look at her picture of what RAI lead to for her.

This does not mean it will happen, but this is what CAN happen after

I-131...so for those newly diagnosed, leaning towards RAI, or being bullied

or pushed into it. I hope this will make you reconsider.

Jody

I was diagnosed in July 1999 with an underactive thyroid. My TSH was 200 and

my T4 was 1. (Normal levels are TSH - 0.35-5.50 and T4 - 4.5-12.0.) I found

several library books about thyroid disorders and decided to seek an

endocrinologist. I was uninsured at the time. I wanted to see Dr.H, but he

required a referral and the initial visit was $250. I called Dr. Nukemall as

he was nearby and the initial visit was only $150.

From the first visit to him on 10/21/99, I could tell that his " bedside

manner " was not great, but that is the case with a lot of doctors. He

suggested a thyroid scan but as I was uninsured, I could not afford it. He

assured me that by the blood work results and my family history, it was

evident that I had Hashimoto's Thyroiditis. He gave me some pamphlets and I

scheduled an appointment for 5 weeks later. I remained on the dosage of

Synthroid that the Urgent Care General Practitioner had given me when I was

diagnosed. (Kudos to that doc.she diagnosed me on the first visit without

knowing me at all!) The next visit was 11/22/99. Dr. Nukemall stated that my

blood work looked good. I said, " Then why do I still feel so bad? " His only

response was, " I don't know but it doesn't have anything to do with your

thyroid. " I asked him, " Do you think it is time to start talking about

putting me on an antidepressant? " (This is a lingering symptom of thyroid

disease.) He replied, " Are you depressed? " I said, " Yes, " and he wrote out

the scrip. That was it! I scheduled an appointment for 01/20/00.

He lowered my dosage of Synthroid on that visit, also on the next 2 visits.

A few weeks before my visit on 07/20/00, I quit taking the Synthroid

altogether as I was having heart palpitations, rapid heart rate, hand

tremors and intolerance to heat. Dr. Nukemall said that I had Thyrotoxicosis

(hyperthyroid) and immediately suggested I needed to have Radioactive

Iodine. He stated that the other options were surgery and antithyroid

medication, but didn't tell me the pros or cons of any of these options. I

told him that I couldn't afford RAI or surgery and that I wanted to try the

antithyroid medication instead. I began taking 20 milligrams of Tapazole per

day.

Also on that visit, I asked him why this was happening and his answer was,

" It happens sometimes. " I asked him if he had ever seen this before and he

said that he had not seen a case like mine in his career. As I was paying

the receptionist, I remembered that I had read that a beta blocker is

suggested for hyperthyroid patients to decrease heart rate. So I went back

to his office and said, " Shouldn't I be taking a beta blocker? " He said,

" Oh, yes, you can take that, " and wrote me a scrip.

By December 2000, I was showing signs of Thyroid Eye Disease in the form of

watery eyes, sensitivity to light and retracting eyelids. On 02/22/01, when

I complained to him that they were bothering me, the only thing he said was,

" Can you close them? " I said, " Yes, " and that was the end of the

conversation.

On 04/26/01, my blood work showed that I was becoming hypothyroid again and

he lowered my dosage of Tapazole to 10 milligrams per day. Again I

complained about my eye symptoms and he again asked me if I could close

them. End of conversation.

By June, my eyes watered constantly and my right eye was starting to

protrude some. When I saw him on 07/24/01, my thyroid levels were good and I

was feeling fine. I told him that I wanted to have the RAI. The only reason

I requested this was because that was his advice when I first became

hyperthyroid. I thought that it would make my eyes better and my insurance

would pay for it in August. When I asked Dr. Nukemall if the RAI would make

my eyes better, he said, " I don't know, maybe, maybe not. " AT NO TIME DID

HE TELL ME THERE WAS A POSSIBILITY THAT IT COULD MAKE MY EYES WORSE.

I saw him on 08/23/01 to get a referral for the RAI. He did not take my

blood to check my thyroid levels. I asked him if I needed to have a thyroid

scan first to see the amount of RAI that would be necessary and he said I

didn't need that. He called the hospital to make my appointment and went

over a list of precautions that I needed to take for one week after taking

the pill. He did not tell me what medication, if any, that I needed to take

after the procedure. He did not tell me of any possible adverse affects of

RAI. He scheduled an appointment for me to return to him at the end of

October.

I had the RAI on 09/06/01. Within 2 weeks, my upper and lower eyelids were

horribly swollen, my right eye protruded to the point where I couldn't close

it and I had double vision. My husband urged me to see an eye doctor. I saw

my Primary Care Physician on 09/20/01. He called a local ophthalmologist who

stated that he couldn't help me as I had double vision. He referred me to a

neuro ophthalmologist, Dr. C. My PCP also checked my TSH and T4 and found

that I was already hypothyroid. He put me on Synthroid.

That same day, I came home and got on the internet to see what I could find

out about neuro ophthalmology and see what my options for treatment might

be. I found a neuro ophthalmology educational web site run by Dr. R and

wrote to him, explaining my situation and asking him what to expect. The

first sentence of his reply was, " It is a well known fact that thyroid

orbitopathy usually worsens after iodine treatment. " I literally ran to the

bathroom and got sick! I felt like I had been kicked in the stomach! Before

I had the RAI, I researched it and didn't find any information that said it

could be harmful. After the reply from Dr. R, I got online and dug deeper.

To my horror, I found several websites and studies to validate what he said.

Some of the info stated that it was controversial, but even if I had known

that there was a POSSIBILITY of my eyes getting worse, I would not have put

radiation in my body!

I saw Dr. C on 10/04/01. She asked me who my endo was, and when I told her,

she said, " He's still practicing? " I told her that I wanted to switch to Dr.

H and she recommended him. She did a thorough examination of my eyes and

advised me to quit smoking, sleep elevated, use artificial tears at least 4

times a day and a heavier eye lubricant at night to protect my corneas from

developing ulcers. She advised me that I would have to have muscle surgery

to correct the double vision, but that I would have to have 6 months of

stability before it could be done. She did not want to prescribe glasses as

I would possibly have to have them changed every month.

I went back to my PCP on 10/10/01 to get a referral to see Dr. H. I

cancelled my appointment with Dr.Nukemall. On my second visit to Dr. C on

11/08/01, she took one look at me and couldn't believe how much worse I had

gotten in one month. She referred me to an Oculoplastic Surgeon, Dr. B, for

decompression surgery. This surgery involves removing bones from between the

eye sockets and sinuses so the eyes can sit back in a more natural position

and remove pressure from the optic nerves.

I saw Dr. B on 11/13/01. He stated that I needed the surgery but I needed to

get my thyroid stabilized first. He also advised me to quit smoking, which I

did on 11/29/01. He scheduled a CT scan for me. I saw him again on 12/06/01

to make sure I was not having any involvement with the optic nerves. The CT

showed that the muscles in my eyes were swollen six times their normal size.

The first visit to my new endo, Dr. H, was on 12/12/01. By this time, I was

an emotional and physical wreck. (My PCP put me on an antidepressant on

12/10/01.) I was extremely hypothyroid, depressed and anxious. I had not

been able to work since 12/05/01. All of those months of driving to and from

work with double vision had stressed me out to the point that I felt like I

was going to have a break down. I was petrified every time I had to get in a

car or go out in public. I could barely see to fill out the paperwork at his

office! I was having horrible cramps in my neck as the only way I could see

without double vision was to lean my head way over to the right side. I was

exhausted but had insomnia. I just walked around crying all the time. So Dr.

H took me out of work and I went on short term disability through my

employer. He raised my Synthroid as my thyroid levels were " as bad as it

gets. " He stated that I should not have been a candidate for RAI as I was

symptomatic of TED and had been a smoker.

I saw Dr. C again on 12/13/01. She felt that I needed to have the

decompression surgery right away. She made an appointment for me with Dr. B

for 12/18/01. She gave me a scrip for glasses and one for steroids to reduce

the swelling in my eyes. She told me not to fill the scrip for glasses until

I saw Dr. B. The next day, she called and told me not to take the steroids.

She had talked to Dr. H, who had spoken with one of the leading nuero ophths

in the world at the Wilmer Eye Institute, and they decided that the side

effects from the steroids were not worth the benefits.

When I saw Dr. B on 12/18/01, he advised me to get the scrip for glasses

filled and it was not time for the surgery yet. In the meantime, the

disability insurance carrier for my company was telling me that I needed to

get the glasses because if I could see then I could get back to work.

I took my scrip to the optician on 12/20/01, but was informed that they

wouldn't be ready until 01/02/02 or 01/03/02 as they would be closed for the

holidays. I called Dr. H to get him to release me to return to work since I

thought I would be able to see to drive after I got my glasses. My employer

had me scheduled to come back to work on 01/07/02. Then it snowed and the

optician's office was closed for two days and my glasses wouldn't be ready

until the afternoon of the 7th.

I picked up my glasses that day, thinking this would be my " fix " and I could

continue to work, but I was wrong. Because of the double vision, there is a

temporary prism on one lens to correct that. Unfortunately, I still can't

see well enough to drive because the prism causes everything to be blurry,

and if I look side to side or up or down, I have the double vision. I felt

it was best to resign from my job. They wanted a date that I would be able

to return and I couldn't give them one. It may be at least 2 years before I

will be well.

So my situation now is this: My thyroid gland is destroyed. I can't see. I

am taking an antidepressant and sometimes anti-anxiety meds (which I used

have to take every time I left my house or I couldn't breathe.that has

gotten better and I have not taken those in a while). I look like I am 57

instead of 37. I don't want to leave my house. I had to quit a job with

great pay and benefits. I cannot drive to work or to help with the

management of my household and family. My husband has to take time off work

to take me to doctors or my family drives down from over an hour away to

take me. I had health insurance for my family through my job. We now have it

through my husband's employer, but it costs twice as much. I will have to

have at least two surgeries to correct my vision and possibly a third to fix

my eyelids. This is what I look like now:

http://www.suite101.com/files/mysites/LISALOU/IT'S%20ME!

The stress of this situation has affected my marriage as well. This is

embarrassing for me to speak about, but because of the way I look, I have

had problems being intimate with my husband. Also, my husband has developed

alopecia areata, which is an autoimmune disorder that is brought on by

stress. He had lost so much hair that we had to shave his head. (He jokes

that it all started when I kissed him on the cheek once after RAI. He got a

bald spot on his beard and eventually it spread to his eyebrows and scalp.

Things that make ya go HMMMM?!)

I feel that Dr. Nukemall totally mismanaged my treatment. The last two

visits to him before RAI, my thyroid blood levels were stabilized and I was

heading toward remission! I should have been kept on the anti-thyroid

medication. I should have been advised of the possible adverse affects of

RAI on patients with TED. He never addressed the TED at all! He should've

referred me to an ophthalmologist as soon as I began to show TED symptoms.

And...........my lawyer agrees! Stay tuned....

lisa

[ 05-09-2002, 06:29 PM: Message edited by: hiroshima ]

--------------------

Age 38. Diagnosed Hashimoto's 1999, turned into Graves with concurrent GO,

10 months Tapazole, RAI Sept 2001, hypo in 2 weeks,DEVASTATING RESULTS TO

EYES. Facing at least 3 surgeries to correct.

GOD IS GOOD ALWAYS!!!!!!!!!!

_________________________________________________________________

Join the world's largest e-mail service with MSN Hotmail.

http://www.hotmail.com

-------------------------------------

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.

----------------------------------------

DISCLAIMER

Advertisments placed on this yahoo groups list does not have the endorsement

of

the listowner. I have no input as to what ads are attached to emails.

----------------------------------------------------------------------------

----------

May 11, 2002

HI ,

She is. We had to remove most of her stories, and am hoping will take

it out of group soon, and she pulled her photo down as her lawyer said she

can't be sharing it, especially on the internet until the lawsuit is

settled.

BTW, I am taking it easy this weekend. This was an overwhelming week. But

doing good now.

Jody

_________________________________________________________________

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May 11, 2002

> HI ,

> She is. We had to remove most of her stories, and am hoping Jean

will take

> it out of group soon, and she pulled her photo down as her lawyer

said she

> can't be sharing it, especially on the internet until the lawsuit is

> settled.

>

> BTW, I am taking it easy this weekend. This was an overwhelming

week. But

> doing good now.

> Jody

I'll be doing this momentarily, both the original post and any posts

that quoted it (I was hoping I could edit the messages, but the system

won't let me edit a message once it hits the archives).

C

January 13, 2003

Kristi:

What a nice story. sounds like a darling. I remember how sweet

Sophie was when I was worrying about Putter. She was just five then.

Salli

January 13, 2003

Kristi:

What a nice story. sounds like a darling. I remember how sweet

Sophie was when I was worrying about Putter. She was just five then.

Salli

January 13, 2003

Salli, you're going to think that I'm insane, but I just love you.

and Putter. and your whole family I'm sure. I feel like I know you

already thru your stories. I think you and Sissi need to make a

complelation..........Woodbine Publishing.

January 13, 2003

Salli, you're going to think that I'm insane, but I just love you.

and Putter. and your whole family I'm sure. I feel like I know you

already thru your stories. I think you and Sissi need to make a

complelation..........Woodbine Publishing.

January 13, 2003

Kristi,

What a sweet sentiment. Don't you love how our kids start out as clean

slates and look at everything so clearly? Now if we could just get adults

to have their eyes open as widely as .

Sue

January 13, 2003

Kristi,

What a sweet sentiment. Don't you love how our kids start out as clean

slates and look at everything so clearly? Now if we could just get adults

to have their eyes open as widely as .

Sue

January 13, 2003

Kristi,

What a sweet sentiment. Don't you love how our kids start out as clean

slates and look at everything so clearly? Now if we could just get adults

to have their eyes open as widely as .

Sue

January 16, 2003

Thanks for sharing. I can relate to putting your frustrations on paper.

It works for me!

Sissi in " mad at the world " mode

January 22, 2005

,

I have to say , after reading your story, you are truly inspirational.

Thank you from the bottom of my heart for sharing your story

Deb

33yrold husband Joe, was diagnosed with CC in Sept,

resection on Sept 27th 2004

open wound from infection until Jan 2005

Ileostomy reversal Dec 7th 2004

Chemo regiment begun Jan 2005

5fu/levorican/Oxaplatin/ Avastin to be added at later date

January 22, 2005

Hi Jay and all..

My story:

January 2003: Saw family Doctor and complained of gas and bloating. " women

seem to suffer from this often, You most likely have IBS " (irritable bowel

syndrome)

July 2003: Regular PAP check up with family doctor. " Here is the number if you

want to make an appointment for colonoscopy, seems you have some polyps you may

want removed " I heard no urgency in his voice, more a choice for me. I am

(was) naive about colon cancer.. and procrastinate.

November 2003.. had some vaginal discharge, not normal for me went to Dr.

thinking I would be sent home with antibiotic for urinary tract infection, but,

not to be. They sent me home telling me no trace of infection, " feel free to

douche if you want " huh?s

3 days later, I push blood out while standing, about the the size of a pencil

eraser. First time that has ever happened. I had blood in stools since age of

28, saw doctor at that time, it was hemorrhoid related, so occasional blood in

stools never really alarmed me. It should have at some point, but I'm not sure

when it changed from hemorrhoid related to cancer related? The ball starts

rolling.

December 10th, 2003 was my official diagnosis of cancer, following biopsy of a

mass found during examination with OB/GYN. Not sure of the primary origin, as

it is invading rectum and vaginal wall.

December 11th a colonoscopy revealed it was colon cancer. I am referred to a

colo/rectal surgeon, a radiologist, and an oncologist, all whom I now refer to

as my posse.

December 22nd, 2003 started 5FU continuous pump, and radiation, to reduce size

of tumor in preparation for surgery to remove tumor. December 23rd, results

from a PET scan reveal mets to my lungs, I am deemed inoperable, for now.

First part of January, complain of headaches, MRI reveals only good tissue on

brain. I complain of a sore back, bone scan reveals no cancer in bones.

Radiation and chemo for 6 weeks, getting very sick from the radiation.

January 28th, (28 treatments) radiation stops, January 30th chemo pump removed.

Physical examination shows some improvement to tumor size, but a few more weeks

to see what results show before we start treatment directed at lungs.

February 9th, unscheduled x-ray to look for blockage, nothing revealed. Still

very sick and trouble having BM.

February 10.. abdominal cramping and pain worsening. When I was finally able to

have a " movement " fecal matter discharges vagainally. (at this point, I didn't

care if it came out my nose.. I needed relief!!!) However, it was a serious

situation, we called my oncologist, " You have formed a fistula between vagina

and rectum " (I had never heard of a fistula before.) It is a hole between 2

organs.

February 17th, I see my colo/rectal surgeon. She gives me a choice between two

emergency surgeries: go in a perform a colostomy and close me back up, or go in

and perform colostomy, and do exploratory, and attempt to remove the tumor.

Well.. duh! I chose to remove the tumor!

February 18th, CT scan of chest and abdomen to show results of chemo and

radiation. My oncologist previously set me up start a new round of chemo

(never happened due to emergency surgery), meantime I continue to be very

uncomfortable and sore, (constipation, and extreme abdominal cramps) from

radiation.

February 20th, I'm admitted for surgery. Right before surgery, as I am being

prepped and in my pre-operative bed, the surgeon studies the results of my CT

scan, and it reveals NO lung lesions!! Chemo seems to have taken care of them!

This news was delivered to me and my husband literally as I was being wheeled

into the OR! We couldn't have gone into surgery with better news!!! I cried

and thanked God until I was " out " !!! My husband did too! 8 hours later I am

woken from surgery. My surgeon tells me they got the tumor with GOOD margins.

However, while they were doing the surgery, they found the cancer had also

spread to my bladder. (undetected on any of my scans) Another addition to my

posse, a urologist, was called in to help with that part of the surgery. He had

to take 1/3 of my bladder, and remove a portion of one of my uriters (sp?) which

is damaged from radiation, and connect it to the other uritor, putting a stint

in there so it would heal properly. My kidneys are healthy. I had a 12 day

hospital stay. I have lost 40 pounds since the day of my diagnosis, 30 of them

were lost since surgery 12 days ago.

March 1st, I'm released from the hospital, and sent home with drain tubes

(removed 4 weeks later.) and a cathedar (removed 8 weeks later.)

After the cathedar is removed I have a bladder with no control. Constant

leaking proves to be a second fistula, this time between vagina and bladder.

I will have elective surgery eventually to attempt a repair. The problem is the

radiated tissue will not allow it to heal. My urologist tells me he wants to

perform surgery to repair the fistula by finding good tissue (NOT radiated) to

" patch " the hole. (I say why not just use a tire patch?) But, first I will

undergo my chemo regimen the oncologist has ordered.

Urologist first attempts an " outpatient " surgery in the middle of April, before

my chemo starts. He went in vaginally with a scope, and cauterized, hoping to

develop scar tissue and close the fistula. He really is trying to avoid me

having to have a urostomy, as well as a colostomy. This surgery failed.

Although, he made no promises to me by telling me that he didn't have high hopes

for the success of this surgery, but he wanted to try this before attempting

another major abdominal surgery. I truly appreciate his attempts at avoiding

this!

April 27th, 2004 I start my new regimen of Chemo. I had a PET scan done prior

to this for a baseline. It reveals the lungs have tumors again. Being off

chemo for 3 months during recovery allows them to reappear. My new chemo

consists of: leucovorin, oxiplatin, avastin and a 46 hour continuous 5fu pump,

every other week. I had 13 rounds of this regimen. I only had to miss one

treatment, not because my blood counts were bad, but because I developed a

horrible infection in my foot. I believe I picked up a fungus from being in

lake water (July 22nd, 2004). It was diagnosed as cellulitis. Extremely

painful. I was put on a strong antibiotic that took care of it, but it was a

stubborn infection, the antibiotic didn't start to work for 6 days. I was happy

to avoid being admitted to the hospital, and hooked intravenously to an

antibiotic, which would have been the next step had the oral antibiotic not

worked. The side affects of chemo for me were weakness, fatigue, a bit of

nausea, and toward the end I developed minor numbness in my fingers and feet. I

am still experiencing that.

September 30th, 2004, PET scan reveals no evidence of cancer in my body.

Oncologist orders 3 more rounds of chemo.

October 2004, I press the issue of my sore back, first noted in January 2004.

Oncologist orders a thin line CT scan, and results show it as being Arthritic.

(I don't totally trust that.)

November 3rd, 2004 chemo is stopped, in preparation for my bladder surgery

scheduled for December 7th, 2004. My urologist has coordinated with my

colo/rectal surgeon to assist him in the surgery. (I LOVE both these surgeons,

and trust them with all my being.) I have been advised during my consult with

my urologist that there is about a 65% chance of success with this surgery.

Because of the radiated tissue, he can make no promises, but wants to attempt

the surgery. My choice is to take the chance. As I have been wearing depends

and security pads since April when my cathedar was removed, due to lack of any

control with my bladder.

December 2nd, 2004 I have a consult with my colo/rectal surgeon who will be

assisting in the surgery. She tells me they will be doing exploratory surgery

in abdomen as well, looking for small cells of cancer that would be spread

throughout my abdomen, and are not normally detected on scans. Talk about

anxiety!!!

December 7th 2004, surgery takes place. I wake up to wonderful news! They

found good tissue on my omentum (fatty tissue on my stomach). They found NO

cancer in abdomen area. They told us they couldn't have hoped for better

results! My hospital stay was 7 days. I'm sent home with a cathedar, to be in

for a month to allow plenty of time for healing. When it is removed, we will

know if the surgery was a success. (no more leaky bladder.)

January 1st, 2005 I end up in the ER due to an obstructed cathedar. VERY

painful!! They had to remove one cathedar, and insert a new one to take care of

the obstruction!

January 3rd, 2005, a scheduled visit to my urologist to have the cathedar

removed. 10 minutes later I am peeing in the toilet, because I have the urge to

go!! I now pee with the best of 'em!!! I have a bit of leaking still, but am

not convinced it is urine, but think it is still draining from the surgery. It

has been almost 7 weeks since surgery to this point. (I write this on January

22nd, 2005)

January 19th, 2005, I receive results from a CT scan, taken January 5th, 2005.

There continues to be no evidence of cancer in my abdomen, pelvic area, or

lungs. Blood work looks excellent. (CEA is at 1.9) Chemo is discontinued.

Oncologist doesn't plan to start me on it again until necessary, which of course

would mean recurrence.

I will be monitored closely now. I have a colonoscopy scheduled for February

15th, 2005, and a PET scan scheduled for February 24th, 2005. I have a IVP

scheduled in April, my urologist will be looking at my kidneys, uriters, and

bladder.

And from here on, I guess I will be having many scans to follow up, and I pray

the good news continues for a long, long time. But am prepared for whatever

lies ahead.

Sorry about mis-spellings, those medical terms get me everytime!

see my webpage:

http://www.sitelibrarian.com/teresa/.html<http://www.sitelibrarian.com/ter\

esa/.html>

January 22, 2005

Wow ... You definitely have met your challenge and certainly looks

promising. I look forward to that day when they say no more chemo... Also hoping

really hard that I don't need radiation. That stuff is wicked. Take care,

continue to do well.

Jolene - if I can pee and poop - I am doing okay!!!

January 22, 2005

, you have truly been through the " wringer " and I for one

admire your strength, courage, and humor as well. What a story and I

tip my hat to you. Keep up the good work and I just know you will.

Hugs,

Monika

> Hi Jay and all..

>

> My story:

> January 2003: Saw family Doctor and complained of gas and

bloating. " women seem to suffer from this often, You most likely

have IBS " (irritable bowel syndrome)

>

> July 2003: Regular PAP check up with family doctor. " Here is the

number if you want to make an appointment for colonoscopy, seems you

have some polyps you may want removed " I heard no urgency in his

voice, more a choice for me. I am (was) naive about colon cancer..

and procrastinate.

>

> November 2003.. had some vaginal discharge, not normal for me went

to Dr. thinking I would be sent home with antibiotic for urinary

tract infection, but, not to be. They sent me home telling me no

trace of infection, " feel free to douche if you want " huh?s

>

> 3 days later, I push blood out while standing, about the the size

of a pencil eraser. First time that has ever happened. I had blood

in stools since age of 28, saw doctor at that time, it was hemorrhoid

related, so occasional blood in stools never really alarmed me. It

should have at some point, but I'm not sure when it changed from

hemorrhoid related to cancer related? The ball starts rolling.

>

> December 10th, 2003 was my official diagnosis of cancer, following

biopsy of a mass found during examination with OB/GYN. Not sure of

the primary origin, as it is invading rectum and vaginal wall.

>

> December 11th a colonoscopy revealed it was colon cancer. I am

referred to a colo/rectal surgeon, a radiologist, and an oncologist,

all whom I now refer to as my posse.

>

> December 22nd, 2003 started 5FU continuous pump, and radiation, to

reduce size of tumor in preparation for surgery to remove tumor.

December 23rd, results from a PET scan reveal mets to my lungs, I am

deemed inoperable, for now.

>

> First part of January, complain of headaches, MRI reveals only good

tissue on brain. I complain of a sore back, bone scan reveals no

cancer in bones.

>

> Radiation and chemo for 6 weeks, getting very sick from the

radiation.

> January 28th, (28 treatments) radiation stops, January 30th chemo

pump removed. Physical examination shows some improvement to tumor

size, but a few more weeks to see what results show before we start

treatment directed at lungs.

>

> February 9th, unscheduled x-ray to look for blockage, nothing

revealed. Still very sick and trouble having BM.

>

> February 10.. abdominal cramping and pain worsening. When I was

finally able to have a " movement " fecal matter discharges

vagainally. (at this point, I didn't care if it came out my nose.. I

needed relief!!!) However, it was a serious situation, we called my

oncologist, " You have formed a fistula between vagina and rectum "

(I had never heard of a fistula before.) It is a hole between 2

organs.

>

> February 17th, I see my colo/rectal surgeon. She gives me a choice

between two emergency surgeries: go in a perform a colostomy and

close me back up, or go in and perform colostomy, and do exploratory,

and attempt to remove the tumor. Well.. duh! I chose to remove the

tumor!

>

> February 18th, CT scan of chest and abdomen to show results of

chemo and radiation. My oncologist previously set me up start a new

round of chemo (never happened due to emergency surgery), meantime I

continue to be very uncomfortable and sore, (constipation, and

extreme abdominal cramps) from radiation.

>

> February 20th, I'm admitted for surgery. Right before surgery, as

I am being prepped and in my pre-operative bed, the surgeon studies

the results of my CT scan, and it reveals NO lung lesions!! Chemo

seems to have taken care of them! This news was delivered to me and

my husband literally as I was being wheeled into the OR! We couldn't

have gone into surgery with better news!!! I cried and thanked God

until I was " out " !!! My husband did too! 8 hours later I am woken

from surgery. My surgeon tells me they got the tumor with GOOD

margins. However, while they were doing the surgery, they found the

cancer had also spread to my bladder. (undetected on any of my

scans) Another addition to my posse, a urologist, was called in to

help with that part of the surgery. He had to take 1/3 of my

bladder, and remove a portion of one of my uriters (sp?) which is

damaged from radiation, and connect it to the other uritor, putting a

stint in there so it would heal properly. My kidneys are healthy. I

had a 12 day hospital stay. I have lost 40 pounds since the day of

my diagnosis, 30 of them were lost since surgery 12 days ago.

>

> March 1st, I'm released from the hospital, and sent home with drain

tubes (removed 4 weeks later.) and a cathedar (removed 8 weeks

later.)

> After the cathedar is removed I have a bladder with no control.

Constant leaking proves to be a second fistula, this time between

vagina and bladder.

> I will have elective surgery eventually to attempt a repair. The

problem is the radiated tissue will not allow it to heal. My

urologist tells me he wants to perform surgery to repair the fistula

by finding good tissue (NOT radiated) to " patch " the hole. (I say

why not just use a tire patch?) But, first I will undergo my chemo

regimen the oncologist has ordered.

> Urologist first attempts an " outpatient " surgery in the middle of

April, before my chemo starts. He went in vaginally with a scope,

and cauterized, hoping to develop scar tissue and close the fistula.

He really is trying to avoid me having to have a urostomy, as well as

a colostomy. This surgery failed. Although, he made no promises

to me by telling me that he didn't have high hopes for the success of

this surgery, but he wanted to try this before attempting another

major abdominal surgery. I truly appreciate his attempts at avoiding

this!

>

> April 27th, 2004 I start my new regimen of Chemo. I had a PET scan

done prior to this for a baseline. It reveals the lungs have tumors

again. Being off chemo for 3 months during recovery allows them to

reappear. My new chemo consists of: leucovorin, oxiplatin, avastin

and a 46 hour continuous 5fu pump, every other week. I had 13 rounds

of this regimen. I only had to miss one treatment, not because my

blood counts were bad, but because I developed a horrible infection

in my foot. I believe I picked up a fungus from being in lake water

(July 22nd, 2004). It was diagnosed as cellulitis. Extremely

painful. I was put on a strong antibiotic that took care of it, but

it was a stubborn infection, the antibiotic didn't start to work for

6 days. I was happy to avoid being admitted to the hospital, and

hooked intravenously to an antibiotic, which would have been the next

step had the oral antibiotic not worked. The side affects of chemo

for me were weakness, fatigue, a bit of nausea, and toward the end I

developed minor numbness in my fingers and feet. I am still

experiencing that.

>

> September 30th, 2004, PET scan reveals no evidence of cancer in my

body. Oncologist orders 3 more rounds of chemo.

>

> October 2004, I press the issue of my sore back, first noted in

January 2004. Oncologist orders a thin line CT scan, and results

show it as being Arthritic. (I don't totally trust that.)

>

> November 3rd, 2004 chemo is stopped, in preparation for my bladder

surgery scheduled for December 7th, 2004. My urologist has

coordinated with my colo/rectal surgeon to assist him in the surgery.

(I LOVE both these surgeons, and trust them with all my being.) I

have been advised during my consult with my urologist that there is

about a 65% chance of success with this surgery. Because of the

radiated tissue, he can make no promises, but wants to attempt the

surgery. My choice is to take the chance. As I have been wearing

depends and security pads since April when my cathedar was removed,

due to lack of any control with my bladder.

>

> December 2nd, 2004 I have a consult with my colo/rectal surgeon who

will be assisting in the surgery. She tells me they will be doing

exploratory surgery in abdomen as well, looking for small cells of

cancer that would be spread throughout my abdomen, and are not

normally detected on scans. Talk about anxiety!!!

>

> December 7th 2004, surgery takes place. I wake up to wonderful

news! They found good tissue on my omentum (fatty tissue on my

stomach). They found NO cancer in abdomen area. They told us they

couldn't have hoped for better results! My hospital stay was 7

days. I'm sent home with a cathedar, to be in for a month to allow

plenty of time for healing. When it is removed, we will know if the

surgery was a success. (no more leaky bladder.)

>

> January 1st, 2005 I end up in the ER due to an obstructed

cathedar. VERY painful!! They had to remove one cathedar, and

insert a new one to take care of the obstruction!

>

> January 3rd, 2005, a scheduled visit to my urologist to have the

cathedar removed. 10 minutes later I am peeing in the toilet,

because I have the urge to go!! I now pee with the best of 'em!!! I

have a bit of leaking still, but am not convinced it is urine, but

think it is still draining from the surgery. It has been almost 7

weeks since surgery to this point. (I write this on January 22nd,

2005)

>

> January 19th, 2005, I receive results from a CT scan, taken January

5th, 2005. There continues to be no evidence of cancer in my

abdomen, pelvic area, or lungs. Blood work looks excellent. (CEA is

at 1.9) Chemo is discontinued. Oncologist doesn't plan to start me

on it again until necessary, which of course would mean recurrence.

>

> I will be monitored closely now. I have a colonoscopy scheduled

for February 15th, 2005, and a PET scan scheduled for February 24th,

2005. I have a IVP scheduled in April, my urologist will be looking

at my kidneys, uriters, and bladder.

>

> And from here on, I guess I will be having many scans to follow up,

and I pray the good news continues for a long, long time. But am

prepared for whatever lies ahead.

>

> Sorry about mis-spellings, those medical terms get me everytime!

>

> see my webpage:

>

http://www.sitelibrarian.com/teresa/.html<http://www.sitelibrari

an.com/teresa/.html>

>

January 22, 2005

Oh Theresa, I just want to say God Bless Your spirit. I can feel it.

I am suffering the neuropathy (numbness) bad ..fingers and feet.

You go girl.

Karima

Re: 's story

Hi Jay and all..

My story:

January 2003: Saw family Doctor and complained of gas and bloating. " women

seem to suffer from this often, You most likely have IBS " (irritable bowel

syndrome)

July 2003: Regular PAP check up with family doctor. " Here is the number if

you want to make an appointment for colonoscopy, seems you have some polyps you

may want removed " I heard no urgency in his voice, more a choice for me. I am

(was) naive about colon cancer.. and procrastinate.

November 2003.. had some vaginal discharge, not normal for me went to Dr.

thinking I would be sent home with antibiotic for urinary tract infection, but,

not to be. They sent me home telling me no trace of infection, " feel free to

douche if you want " huh?s

3 days later, I push blood out while standing, about the the size of a pencil

eraser. First time that has ever happened. I had blood in stools since age of

28, saw doctor at that time, it was hemorrhoid related, so occasional blood in

stools never really alarmed me. It should have at some point, but I'm not sure

when it changed from hemorrhoid related to cancer related? The ball starts

rolling.

December 10th, 2003 was my official diagnosis of cancer, following biopsy of a

mass found during examination with OB/GYN. Not sure of the primary origin, as

it is invading rectum and vaginal wall.

December 11th a colonoscopy revealed it was colon cancer. I am referred to a

colo/rectal surgeon, a radiologist, and an oncologist, all whom I now refer to

as my posse.

December 22nd, 2003 started 5FU continuous pump, and radiation, to reduce size

of tumor in preparation for surgery to remove tumor. December 23rd, results

from a PET scan reveal mets to my lungs, I am deemed inoperable, for now.

First part of January, complain of headaches, MRI reveals only good tissue on

brain. I complain of a sore back, bone scan reveals no cancer in bones.

Radiation and chemo for 6 weeks, getting very sick from the radiation.

January 28th, (28 treatments) radiation stops, January 30th chemo pump

removed. Physical examination shows some improvement to tumor size, but a few

more weeks to see what results show before we start treatment directed at lungs.

February 9th, unscheduled x-ray to look for blockage, nothing revealed. Still

very sick and trouble having BM.

February 10.. abdominal cramping and pain worsening. When I was finally able

to have a " movement " fecal matter discharges vagainally. (at this point, I

didn't care if it came out my nose.. I needed relief!!!) However, it was a

serious situation, we called my oncologist, " You have formed a fistula between

vagina and rectum " (I had never heard of a fistula before.) It is a hole

between 2 organs.

February 17th, I see my colo/rectal surgeon. She gives me a choice between

two emergency surgeries: go in a perform a colostomy and close me back up, or

go in and perform colostomy, and do exploratory, and attempt to remove the

tumor. Well.. duh! I chose to remove the tumor!