my good news

February 19, 2003

This is great news . And I am so glad to know I am not the only one

that is " directionally challenged " . Is there a support group for that???

(LOL)

Sharon

Mom to , (11, DS) and , (7)

Pawleys Island, South Carolina

My good news

> My sister is moving to Virginia!!! YIPPPEEEEE.

>

> She came down today and her ride took the wrong route. They ended up

eating lunch at TACO Bell and she commented to him " my sister works in a

building that looks like that one across the street " . She saw the county

sign and realized where she was. She circled around to see if my jeep was

there (it was) and she popped in. She is so directionally challenged.

>

> Her assignment is for one year with the potential for permanency. I told

her today that if there are any problems with her transfer, to use a family

hardship (my poor sister has a disabled child and needs my help...lol). She

was quick to respond that she is saving that one for when we move to South

Carolina in 5 years, hehehe!

>

> I'm so happy - and I think I'm going to take my dads offer to watch

for a few days and join Tim on his June trip to Vegas.

>

December 14, 2003

Hey guys, I know this is not liver related but for me it is wonderful news which I have to share. I just got 2 contracts on my house. The first one we signed on Saturday night, the second one the relator knew we had a pending contract but they wanted to make a backup offer in case the first contract doesn't go through. This is wonderful news.

It will lessen my financial burden tremendously and allow me the opportunity to focus on my health. I am going to rent for a year and get my financial house in order as well as see what the transplant evaluation on Tuesday holds for the future, but we got full asking price and I am so happy. You guys cannot imagine how much this lessens my stress factor.

Thanks for letting me share non liver related info. Keep your fingers crossed for the transplant evaluation on Tuesday.

December 14, 2003

That is great news about the house... Yes, will be thinking of you on Tuesday.

Good luck... Keep us posted.

Love Gaynel & Cliff

December 14, 2003

, thanks for sharing this. It is good to know that you got

your price! Good luck.Debby

Re: [ ] My

good news

Hey guys, I know this is not liver

related but for me it is wonderful news which I have to share. I just got

2 contracts on my house. The first one we signed on Saturday night, the

second one the relator knew we had a pending contract but they wanted to make a

backup offer in case the first contract doesn't go through. This is

wonderful news.

It will lessen my financial burden

tremendously and allow me the opportunity to focus on my health. I am

going to rent for a year and get my financial house in order as well as see

what the transplant evaluation on Tuesday holds for the future, but we got full

asking price and I am so happy. You guys cannot imagine how much this

lessens my stress factor.

Thanks for letting me share non

liver related info. Keep your fingers crossed for the transplant

evaluation on Tuesday.

January 7, 2004

Congrats..have you taken vitamins etc? thanks Kim

January 7, 2004

Hi Kitty,

I am happy for your happiness! I sure do hope that you are in remission.

What does your endo base this opinion on? I don't mean to rain on your

parade at all, but I've seen and heard of too many people who are yanked

off meds because the doctor feels " it's time " ; then when they relapse, the

doctor says " the medication failed, and RAI is the next step. " Please don't

let this happen to you.

To truly be in remission, you need to have an absence of antibodies.

Specifically, that means a TSI test result of <2%. I am off meds at this

time, but I don't consider myself to be in remission; just that I have both

TSI and TPO-antibodies that are not very high and are balancing themselves out.

Hope things work out for you. Just go very slowly in tapering off the

medication, and keep testing frequently. I don't really buy the " you have

to get sick before you can get better line " ; you may feel slightly hyper

after a small reduction in dose, but after a couple of days you should feel

evened out. If you don't, then you are reducing too much. Decreasing 1/4

pill at a time is more reasonable, and proceeding very slowly with each

change (i.e., a few weeks at a time, along with testing) is probably best.

At 06:22 PM 1/7/2004, you wrote:

>Hi Everyone,

>

>I went to my general doc yesterday, and in front of him was a letter

>from my endo. The doc read it to me and guess what guys! the endo

>thinks I am in remission! yeah :-) So I realise now I made a big boo

>boo whenI called him and idiot, and got all worked up over him trying

>to get me of the meds...I guess he is not so useless after all!

>Though he should have told me he thought I was in remission,but then

>that' doctors for you..lack of communication!

>

>Anyways the doc said so what are we going to do about your tablets?

>I agreed to go back to half a tablet again and then on o no tablets

>until I see him. The doc said because I took a full tablet,I'm back

>to square one lol. I told him that I was scared and he understood and

>said the hyper symptoms are because I'm having withdrawls from the

>drug and you have to get sick before you can get better.

>

>Everyone please cross your fingers for me for next month and

>hopefully all will be good. You know I haven't even started to help

>myself with relaxation or good nutrition,and he did tell me at the

>start I only had a 25% so this is quite an unexpected suprise. The

>only thing I really have changed in the way of diet was give up soy

>milk at the very start. I was a vegetarian from the age of 15 up

>until 6 months or so before I found out about having Graves.Being a

>vegetarian did me more harm then it did me good. Also when I found

>out about graves,my b12 levels were low and had to have b12

>injections..so I think eating meat and going off soy is the best

>thing I have ever done.

>

>Happy Kitty :-)

January 7, 2004

Hi ,

> I am happy for your happiness! I sure do hope that you are in

>remission.

Thank you so much. I really do hope so also.

> What does your endo base this opinion on?

I have absolutely no idea. The last appointment he did seem happy

with my blood test,and then he told me to do the half a dose etc, but

this is where it gets confusing, he seemed to change his mind after

measuring my goitre. He said he was excited at first when he looked

at my bood test and thought to himself, I wouldn't have to see this

lady in my office again. He never mentioned the word remission. He

then told me, if there is no improvement next vist, I will have the

RAI and he gave me a brochure for it.

What is interesting is that in his letter to my general doc he never

mentions RAI but he does say that if things don't improve, he will do

a needle biopsy on a nodule. Also I questioned the general doc about

why should my goiter matter when it's not that big, and is not

preventing my breathing..he said it doesn't matter. So go figure.

>I don't mean to rain on your parade at all,

No not at all. Thank you for letting me know.

>but I've seen and heard of too many people who are yanked off meds

>because the doctor feels " it's time " ; then when they relapse, the

>doctor says " the medication failed,

Geez, the meds didn't fail them the doctor did. I hope nothing awful

like that happens to me.

>and RAI is the next step. " Please don't let this happen to you.

No way, I will just tell him to put me back on them.

> To truly be in remission, you need to have an absence of

>antibodies. Specifically, that means a TSI test result of <2%.

>I am off meds at this time, but I don't consider myself to be in

>remission; just that I have both

> TSI and TPO-antibodies that are not very high and are balancing

>themselves out.

Well that still great progress, I hope this means you are on your way

to remission.

> Hope things work out for you. Just go very slowly in tapering off

>the medication, and keep testing frequently.

Well I still have to go off them by the 22nd of this month, and I

don't get a blood test until a week before I see the endo on the 17th

of Feb. It would have been good to have a blood test after the half a

tablet but oh well....

Kitty

January 8, 2004

Kitty,

Did you receive a copy of your labs? I found that I would have been SO in

the dark (and suffered accordingly) if I did not receive a copy of every

lab report (heck, I told them when to test me and what to test me for). I

weaned myself off ATDs, even tho the doc wanted me to continue because my

" TSH was too low. " Never mind that I was losing hair like crazy,

constipated, etc. (in other words hypO). It is sounding to me that both of

your doctors are flying by the seats of their pants and don't have a clue

how to treat GD with meds. Please get a copy of Elaine's book, Graves'

Disease: A Practical Guide, and read her articles on Suite 101 as well, if

you haven't already done so. As I recall, you just started the medication,

and it usually takes at least a year before you can go off (unless you

started out very mild or subclinical). If you are feeling good on the

medication, that is a sign that you are not ready to go off. You should not

" have to be off the medication by the 22nd " ; a calendar date is really

ridiculous and arbitrary. Like most of us, you are probably needing to take

charge of your health care, and therefore need to be as informed as

possible. YOU are the captain of your ship.

Best wishes,

At 10:36 PM 1/7/2004, you wrote:

> > Hope things work out for you. Just go very slowly in tapering off

> >the medication, and keep testing frequently.

>

>Well I still have to go off them by the 22nd of this month, and I

>don't get a blood test until a week before I see the endo on the 17th

>of Feb. It would have been good to have a blood test after the half a

>tablet but oh well....

>

>Kitty

August 26, 2007

, That is awesome!! I'm very happy for you! I've felt much

better since beginning Questran (on my own), but now I need to get

remediators out to get house cleaned out. Hoping to eventually, fix

up, sell & move. So glad you're feeling better!

Hugs, Cheryl

August 26, 2007

Glad things are working out for you. . It is always good to hear some

good news. Enjoy.

>

> Hello my dear friends,

>

> I have not been active on the group for a number of months now, busy

with remodeling

> and then recovering from remodeling. But maybe you remember me, Kc,

Carl, , barb? I

> just got the results last night from Dr Shoemaker's site- My VCS test

came back

August 26, 2007

,

That's great. I'm pleased to hear the good news and that you are

doing much better. I'm glad we've been able to help over the years

and it does just go to show, there is hope and often times even

though we can't offer too much, I know the support helps. Hopefully

now you will experience once again some of the normalcy that you

once had in life.

Congrats and thanks for posting again.

KC

--- In , " kl_clayton " <kl_clayton@...>

wrote:

>

> Hello my dear friends,

>

> I have not been active on the group for a number of months now,

busy with remodeling

> and then recovering from remodeling. But maybe you remember me,

Kc, Carl, , barb? I

> just got the results last night from Dr Shoemaker's site- My VCS

test came back

> Negative!!!!!

>

> I knew I was feeling better, but this is the icing on the cake!

>

> Thank you all for the wonderful help and all important moral

support when I was so sick- I

> don't know how I could have gotten through it without you all. My

house is now mold free,

> I still have a couple of outside drainage possible problems to

work out, AND, we are all so

> much better.

>

> Clayton

>

August 28, 2007

Dear KC and all,

It is good to hear your encouragement- this is funny- I got a little too busy,

then it rained

and got steamy hot & I tanked. I think that the heat causes the toxins to

mobilize faster

and I had one heck of a meltdown. Of course, it wasn't fun, but when I remember

that I

used to live like this ALL the time, I am so grateful to be doing so much

better.

My intuition has been invaluable for getting through this and getting the work

on the

house done. And right now it is telling me that I have one last place to fix-

the gutter that

is bent may be leaking water into the roof eave, which I only thought of

recently. I was

trying to figure out why it is only in one area of this one room I have some

tiredness-

subtle, but there.

You know, I was literally dying when I joined this group, and was not too sure

of whether

life would be worth living if I did survive. But, here I am- the body does heal

itself if given

any chance at all, even the depression and physical neurological deficits have

improved so

much, unless I am exposed- you know the drill. All of you are right- you really

have to get

rid of the exposure before you get the most improvement. My negative test result

is such

good news, about my house too- we are still living in the same place that we

have fixed. I

could not be negative if the house was still bad.

Thanks everybody for cheering with me- especially you guys, who have been there

and

some who are there still.

> >

> > Hello my dear friends,

> >

> > I have not been active on the group for a number of months now,

> busy with remodeling and then recovering from remodeling. But maybe you

remember

me, Kc, Carl, , barb? I just got the results last night from Dr Shoemaker's

site- My VCS

> test came back Negative!!!!!

> >

> > I knew I was feeling better, but this is the icing on the cake!

> >

> > Thank you all for the wonderful help and all important moral

> support when I was so sick- I don't know how I could have gotten through it

without you

all. My house is now mold free, I still have a couple of outside drainage

possible problems

to work out, AND, we are all so much better.

> >

> > Clayton

> >

>

August 28, 2007

I must say, I am so happy for you. It is great that you posted this. This kind

of attitude is the kind of thing that give the rest of us something to look

forward to in the future. I know sometimes it seems just hopeless. Outside of

all the financial mess it just seems sometimes like huge uphill struggle just to

feel decent but your encouraging words remind me anyway, that someday I might be

able to smile again and mean it.

Great post, thanks.

kl_clayton <kl_clayton@...> wrote:

Dear KC and all,

It is good to hear your encouragement- this is funny- I got a little too busy,

then it rained

and got steamy hot & I tanked. I think that the heat causes the toxins to

mobilize faster

and I had one heck of a meltdown. Of course, it wasn't fun, but when I remember

that I

used to live like this ALL the time, I am so grateful to be doing so much

better.

August 30, 2007

Thank you for your kind words.

Of course it has been an uphill struggle, since I was dying just 3 years ago and

the doctors

just blamed it all on me, that it was in my head, the tests come back normal,

etc. I think

everyone here knows that drill. I had to do so many things, and with not a whole

lot of

money, and it is a lot to tear apart your house, pay for drs and supplements,

and then

have marriage and family problems with all of that. It did seem bad.

As long as there is life, there is hope. As long as we can draw breath, we can

go forward,

even if it by one body length at a time (grin). I just really had to learn to

not depend on

doctors, to listen to my own body, and see what worked for me. Also not believe

in

everything the " experts " say on what to do to fix your house, since most of them

do not

have a complete understanding of the problem. They were mostly all well meaning,

but it

is a very difficult problem, and complicated. Those on this list were of

paramount

imprtance in my search for good information. And so my instincts were my guide,

and I

should say my sensitivities were my guide. Some of the routes I chose were not

the perfect

ones, but at least I was following myself instead of giving up responsibility to

others. That

is the main point I had to come to. And, I had to stand up for myself, opposed

by nearly

everyone. That is also very difficult when you are sick.

We are still a family, and though it seemed like we would for sure end up

divorced, we

were both patient, and just waited it out. I am lucky my husband has such a good

moral

compass that he would not leave his sick wife when she was at her worst. And he

is lucky

that I was able to be equally patient with him- he was deeply affected by this

mold, but

refused to admit it.

We have yet to see how this will all shake out as far as finances, but I hope

that all will be

well, I will continue to improve and maybe in time I will be able to work again

and help pay

for all this. The good news that way is that I no longer have to see any dr, or

take any

drugs. My body is handling the toxins ok without that expense, with just the

help of some

supplements, that are not all that expensive. Oh- and I have to be REALLY picky

about my

diet. Only organic food, for the rest bothers me, it must still have toxins etc

from the

fertilizer and pesticides. Another bug bear is the genetic engineered foods-

those are

toxic from the get go. They have poisons sliced into the genes. Antibiotic

toxins- another

words for mold toxins, and many other toxins also.

Anyway, thanks for cheering with me! You guys keep up the good work!

--- In , United States Vet <unitedstatesvet@...>

wrote:

>

> I must say, I am so happy for you. It is great that you posted this. This kind

of attitude is

the kind of thing that give the rest of us something to look forward to in the

future. I

December 31, 2007

Rich, I don’t think we’ve “met,” but I want to say how wonderful for you!!

And to happen so unexpectedly and at the holidays must have been very

special…well, crap! I guess it would have been SPECIAL at any time!!

Best to you in your recovery and happy New Year!

Dorothy in NY

_____

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of rich

Sent: Monday, December 31, 2007 4:04 PM

Hepatitis C

Subject: my good news

Hi all

Have been on and off the transplant list for a year now and the last

time I was checked out my MELS were down to a 11 so no transplant till

next check up next month.

Will on the 12th ten days after my birthday I had a call from OHUS

that they had found me a new liver ,WHAT A SCHOCK.

seams I was the only AB blood type on the list on the west coast and a

ab just happen to turn up. It was from out of area is all I have been

told.

s

So had the transplant done on the 13th and came home from the hospital

late in the afternoon on Christmas day. Still one sore old guy here but

everything is working and get the staples out on Friday. now for the

long recovery but do need to be back up and at it by June as I have a

race I want to drive in then.

if you need any info on what I'm going through just drop me a note.

rich

same old guy just some new used parts

December 31, 2007

Wow! That's wonderful news! I'm down right giddy for you. lol

2008 will be your year to shine it seems, good for you and good luck

in that race. Win!

Have a wonderful new year and keep in touch, I'm sure I speak for

everyone when I say that news this good is like a warm ray of

sunshine. ;-)

Gayle

>

> Hi all

> Have been on and off the transplant list for a year now and the

last

> time I was checked out my MELS were down to a 11 so no transplant

till

> next check up next month.

> Will on the 12th ten days after my birthday I had a call from

OHUS

> that they had found me a new liver ,WHAT A SCHOCK.

> seams I was the only AB blood type on the list on the west coast

and a

> ab just happen to turn up. It was from out of area is all I have

been

> told.

> s

> So had the transplant done on the 13th and came home from the

hospital

> late in the afternoon on Christmas day. Still one sore old guy here

but

> everything is working and get the staples out on Friday. now for

the

> long recovery but do need to be back up and at it by June as I

have a

> race I want to drive in then.

> if you need any info on what I'm going through just drop me a note.

>

> rich

>

> same old guy just some new used parts

>

August 20, 2009

THAT'S GREAT! I have had cml for 14 years and have never been pcru !!! close,

but no cigars. Maybe Ariad will do the trick. Congratulations, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

From: snipandtip <no_reply >

Subject: [ ] my good news

Date: Wednesday, August 19, 2009, 9:15 PM

Hi everyone,I recently switched Drs because mine was a real

jerk i always felt depressed when i would leave his office. My new Dr. is

Rappoport at the University of land i got his name from someone in this

group awhile ago i think it was [thank you] it was the best thing i ever

did they made me feel so good the moment i stepped foot into the hospital.My

good news is that i am pcru i just found out today my number is .001 and pcr

says it's negative i am so excited because my old Dr. said that if you don't

reach pcru within 18 months you probably will never get there, it took me 2

years and 10 months to reach it, so if it's taking you longer to reach pcru

don't give up you could still get there it doesn't matter how long it takes.I

could not have lived thru this cml without all of you so i thank you so much for

being there.

Esther

August 20, 2009

Esther that's so wonderful! Congratulations! Did you reach PCRU on Gleevec?

I was diagnosed in May 2008, and had my Gleevec increased to 600mg. 4 weeks ago

because my numbers started going up again. Never reached PCRU.. I get tested in

2 more weeks to see if the increase is helping or if I have to switch to

Sprycel.

I love hearing stories of others who in time, finally reach PCRU. I pray for

that every day.

Sincerely,

________________________________

From: snipandtip <no_reply >

Sent: Wednesday, August 19, 2009 6:15:18 PM

Subject: [ ] my good news

Hi everyone,I recently switched Drs because mine was a real jerk i always felt

depressed when i would leave his office. My new Dr. is Rappoport at the

University of land i got his name from someone in this group awhile ago i

think it was [thank you] it was the best thing i ever did they made me feel

so good the moment i stepped foot into the hospital.My good news is that i am

pcru i just found out today my number is .001 and pcr says it's negative i am so

excited because my old Dr. said that if you don't reach pcru within 18 months

you probably will never get there, it took me 2 years and 10 months to reach it,

so if it's taking you longer to reach pcru don't give up you could still get

there it doesn't matter how long it takes.I could not have lived thru this cml

without all of you so i thank you so much for being there.

Esther

August 20, 2009

-thank you , yes i reached it on 400mg of Gleevec i hope the 600 does it for

you and i pray for everyone in this group to get there too

Esther

-- In , Lomsdalen <llomsdalen@...> wrote:

>

> Esther that's so wonderful! Congratulations! Did you reach PCRU on Gleevec?

> I was diagnosed in May 2008, and had my Gleevec increased to 600mg. 4 weeks

ago because my numbers started going up again. Never reached PCRU.. I get

tested in 2 more weeks to see if the increase is helping or if I have to switch

to Sprycel.

> I love hearing stories of others who in time, finally reach PCRU. I pray for

that every day.

>

> Sincerely,

>

> ________________________________

> From: snipandtip <no_reply >

>

> Sent: Wednesday, August 19, 2009 6:15:18 PM

> Subject: [ ] my good news

>

> Hi everyone,I recently switched Drs because mine was a real jerk i always felt