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Hello ,

Welcome to Atkins Challengers. I can't believe you joined 250 locarb

mailing lists! You must be getting a tremendous amount of mail. I hope you

like our little low key corner and choose to stay around a while. We are a

chatty, friendly group of people.

a

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  • 3 weeks later...
  • 3 years later...
Guest guest

Hi ,

A very warm welcome to you and your family too. I am always saddened when

little ones are afflicted with IgAN. I know as a mother that has to break

your heart.

Both flank pain and fatigue seems to go with IgAN unfortunately. I can tell

you that we have many parents of children with IgAN so you are in good

company there.

It is good that his protein seems to be minimal, and hopefully the biopsy in

July will give you a more definitive diagnosis.

I hope you find this board very supportive.

Welcome again,

In a message dated 5/31/2005 10:22:57 A.M. Pacific Daylight Time,

ashbug369@... writes:

I am so glad to find this group. My 6 year old son

started with kidney pain and hematuria at 4 years old.

He was at the time diagnosed with kidney stones.

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Guest guest

Hi ,

A very warm welcome to you and your family too. I am always saddened when

little ones are afflicted with IgAN. I know as a mother that has to break

your heart.

Both flank pain and fatigue seems to go with IgAN unfortunately. I can tell

you that we have many parents of children with IgAN so you are in good

company there.

It is good that his protein seems to be minimal, and hopefully the biopsy in

July will give you a more definitive diagnosis.

I hope you find this board very supportive.

Welcome again,

In a message dated 5/31/2005 10:22:57 A.M. Pacific Daylight Time,

ashbug369@... writes:

I am so glad to find this group. My 6 year old son

started with kidney pain and hematuria at 4 years old.

He was at the time diagnosed with kidney stones.

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Share on other sites

Guest guest

Hi ,

A very warm welcome to you and your family too. I am always saddened when

little ones are afflicted with IgAN. I know as a mother that has to break

your heart.

Both flank pain and fatigue seems to go with IgAN unfortunately. I can tell

you that we have many parents of children with IgAN so you are in good

company there.

It is good that his protein seems to be minimal, and hopefully the biopsy in

July will give you a more definitive diagnosis.

I hope you find this board very supportive.

Welcome again,

In a message dated 5/31/2005 10:22:57 A.M. Pacific Daylight Time,

ashbug369@... writes:

I am so glad to find this group. My 6 year old son

started with kidney pain and hematuria at 4 years old.

He was at the time diagnosed with kidney stones.

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  • 1 year later...

Hello ,

I have breast implants at the age of 35. I am now 54. I was diagnosed with

bc on left breast in October last year. It was 1.5 cm-had lumpectomy then

radiation.

They did a stereotactic biopsy on me. It probably hurt more than most did. It

was bruised for about a month.

I hope that you will hang here and have a good support group. We are here for

you.

Sharon C Los Angeles CA

SHARON COLEY

DIRECTOR OF SALES

DOUBLETREE HOTEL

888 MONTEBELLO BLVD.

ROSEMEAD, CA 91770

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

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Hello ,

I have breast implants at the age of 35. I am now 54. I was diagnosed with

bc on left breast in October last year. It was 1.5 cm-had lumpectomy then

radiation.

They did a stereotactic biopsy on me. It probably hurt more than most did. It

was bruised for about a month.

I hope that you will hang here and have a good support group. We are here for

you.

Sharon C Los Angeles CA

SHARON COLEY

DIRECTOR OF SALES

DOUBLETREE HOTEL

888 MONTEBELLO BLVD.

ROSEMEAD, CA 91770

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

Link to comment
Share on other sites

Hello ,

I have breast implants at the age of 35. I am now 54. I was diagnosed with

bc on left breast in October last year. It was 1.5 cm-had lumpectomy then

radiation.

They did a stereotactic biopsy on me. It probably hurt more than most did. It

was bruised for about a month.

I hope that you will hang here and have a good support group. We are here for

you.

Sharon C Los Angeles CA

SHARON COLEY

DIRECTOR OF SALES

DOUBLETREE HOTEL

888 MONTEBELLO BLVD.

ROSEMEAD, CA 91770

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

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Share on other sites

  • 8 months later...
Guest guest

Dear ;

Welcome to the group. I am so sorry that Tyler's illness brings you

here, but glad that you found us.

Our son was diagnosed ~4 years ago with PSC + UC, but he's been

pretty stable since then. He's been taking high-dose ursodiol for the

PSC, rifampin for itching, asacol for the UC, and vitamin, folic acid

and fish oil supplements. His latest blood test results have been the

best since his diagnosis, with his alkaline phosphatase now at 154

[the first time below 200 since his diagnosis, and now just slightly

above the upper limit of normal]. He was diagnosed just before going

to college. He's now graduated and is going on to do an M.D./Ph.D. at

Indiana University School of Medicine [starting today!].

While we were also devastated by the diagnosis, we have learned [with

advice and support form this wonderful group] to take every day as it

comes, to enjoy every good day, and not to stress ourselves out too

much with worry about what 'might' be in the future. Although we have

read a lot about the disease and its many complications, and we feel

somewhat prepared to deal with issues as they may arise, we try not

to think about this all the time. Instead we try to celebrate his

accomplishments such as his recent graduation, and the excitement of

his new career etc. We find that work on the PSC Partners Seeking a

Cure Foundation is therapeutic as it provides an opportunity to do

something positive to potentially change the course of the disease

for others over the long term by raising awareness of PSC and dollars

for research. I like to think of this as a war against a devastating

disease, where our weapons are not swords, but rather $ and words

($words). I'm delighted that you can help in fundraising and plan to

come to the conference next year. The friendships you make here

online and at the conference do make a difference!

About the CA19-9 marker, it is possible that Tyler's doctor may not

be too concerned because this marker can rise due to bile-duct

strictures (stenoses), and can fall after the strictures are opened

by dilitation:

_____________________

Z Gastroenterol. 2005 Jun;43(6):587-90.

Impact of dominant stenoses on the serum level of the tumor marker

CA19-9 in patients with primary sclerosing cholangitis.

sen-Benz C, Stiehl A.

Abteilung für Gastroenterologie, Medizinische Klinik IV,

Universitätskliniken Köln, Germany. .Benz@...

BACKGROUND/AIMS: Patients with primary sclerosing cholangitis (PSC)

have an increased risk of developing hepatobiliary tumors. The tumor

marker CA19-9 was claimed to indicate the occurrence of bile duct

carcinoma. This study aimed to assess whether increased serum levels

of CA19-9 in PSC patients with dominant stenoses indicate bile duct

carcinoma. METHODS: The study cohort comprised 106 patients treated

over a median time of 5.0 years (range 0.5 - 13 years). All patients

were treated with ursodeoxycholic acid (UDCA) and whenever they

developed dominant stenoses by endoscopic dilatation of these

stenoses. In endoscopically treated patients, CA19-9 levels were

measured before and 3, 6, 12 and 24 months after endoscopic

dilatation. RESULTS: Of the 106 patients, 22 carcinoma-free patients

and 3 patients with bile duct carcinoma had elevated CA 19 - 9

levels. In 14 out of 25 patients with elevated CA19-9 levels,

dominant stenoses were diagnosed and treated by endoscopic

dilatation. In 71.4 % of the endoscopically treated patients, CA19-9

levels decreased following the endoscopic intervention. CONCLUSIONS:

In PSC patients, increased serum levels of CA19-9 are rarely due to

the development of bile duct carcinoma. In patients with dominant

stenoses, the relief of biliary obstruction by endoscopic dilatation

may lead to a decrease of the serum levels of CA19-9. PMID: 15986288.

_____________________

So it may be that Tyler's doctors will be watching to see if his

serum CA19-9 levels come down after a recent ERCP?

Please feel free to ask questions!

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

West Lafayette, IN

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Guest guest

-----Original

Message-----

In 1999 Jodi wrote,

" My son was just diagnosed with

PSC about six weeks ago. My son, , is 9 1/2

,

If you go to the Yahoo

group web site and look under photos, you can see a picture of showing off

his transplant scar!

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 Listed 7/21/06 @ Baylor Dallas

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