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Old 11-29-2007, 11:10 AM   #1
anne2
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Hi Joe,
Why do people get banned exactly. I got a PM from one of them and I was wondering if they can get my email add. also?
Thanks,
Anne
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Old 11-29-2007, 11:22 AM   #2
CPA
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I cannot speak for Joe, but the general rule of this board (other than to be nice to each other) is to not use this board for marketing purposes (ie. spam). The names he listed as banned were using the board to send private messages to other members trying to get them to go to a website to buy stuff.
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Diagnosed 10/05, age 39
R Mast 11/05
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TCH Chemo started 1/06
Finished TC 4/06
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Old 11-29-2007, 08:11 PM   #3
IllinoisLady
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Thanks to Anne2 & CPA as I just got a note not directly from the boards but by private message. I took the person's name, but other than that was not sure what to do. The message was proposing a vitamin protocol. This may or may not work but the point was that I've spent a lot of time in mental preparation for my chemotherapy and other physician prescribed treatment modes so this sort of came as a shock. There were options to ban the person---I assume from using my address or personal in-box so I guess that is what I will do if I receive anything else.
Muga done yesterday.........first chemo on Monday. The great thing about Monday is I think I'll feel better about it all after I've done it for the first time and know more about just what will happen. Blood work first before the chemo. No port---I don't think I'm going to have that much chemotherapy overall. Will probably have some questions after Monday.
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IllinoisLady/Jackie
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Old 11-29-2007, 08:25 PM   #4
Joan M
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I also received a PM from a banned person yesterday.

The message looked very suspicious to me. So I sent a message to the contact e-mail address as an alert.

There was a link but I didn't click on it fearing some kind of computer virus.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 11-29-2007, 09:13 PM   #5
Mary Jo
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...............and today I received an e-mail with the subject: "RE: her2 support forum" from a STEPHEN BARR. The e-mail was signed by "sincerely - Pam Barr" Basically the e-mail said "I'm registerd with her2 support, I think. I'm a newbie and would appreciate any help on posting."

I've never emailed this person to get a "reply" from her/him. Wondering if this too is a scam. I did forward the e-mail to Joe but haven't heard. Not even sure if I sent the e-mail to the right e-mail address.

Maybe Pam Barr is a member. I'm not sure. Looked the name up on members list bu I didn't find the name.

Did this happen to anyone else?

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 11-29-2007, 09:52 PM   #6
Bev
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Received the pm re the supplements. I was feeling guilty about not opening it for a day.

MJ, have not heard from the Barrs.

Anne, unless you have your address in your profile, I don't think they can get it. I will have my 13 yr old research this.

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