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06-27-2008, 03:38 PM
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#1
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Maybe someone could help.............
Hello friends,
Maybe someone here could help. A friend of mine was diagnosed with stage IIIC primary peritoneal cancer a little more than a year ago. She underwent major surgery and 90 percent of the cancer was removed. The 10 percent left after surgery was because there was no sizeable tumors to remove. She did approximately 13 tri-weekly carboplatin/taxol treatments. Her CA125 number went from the high 900's to 17. So the chemo worked. However, now that she is off of the chemo (since February) her number has climbed back to 421 as of last Monday.
The reason for my e-mail is she asked me to help her search for the top gynecological oncologist in the country. She will be going to Cancer Centers of America on Monday but wants to get all her "ducks in a row."
So if any of you could be of help she and I would appreciate it very much. God works in mysterious ways...so I am trusting that He led me to you so you can be of help to my friend, Ruth.
Love to you all....
Mary Jo
P.S. Also she was tested positive for the BRCA 1 gene.
__________________
"Be still and know that I am God." Psalm 46:10
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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06-27-2008, 05:21 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Marejo! I'll be praying for your friend to find an answer to her search. You take care, Love, Bill
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For Nicola
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06-27-2008, 08:03 PM
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#3
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Mary Jo,
I've heard that Unversity of Pittsburgh Medical Center has a good cancer center. Also, it ranked 12th in the nation
__________________
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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06-27-2008, 08:11 PM
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#4
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Mary Jo,
I've heard that Unversity of Pittsburgh Medical Center has an excellent cancer institute. It was ranked 12th in the nation for gynocological cancer by U.S. News: http://www.upmccancercenters.com/new...307_honor.html
Wishing your friend the best, Joan
Also, the daughter-in-law of one of my girlfriends, a young woman who's a child psychiatrist, has been there for ovarian cancer treatment.
http://www.upmccancercenters.com/
The prototype for the radiofrequency cancer machine built by John Kanzius, the leukemia patient in Florida, was first tested successfully at the University of Pittsburgh Medical Center.
I'm sure there are also other top places your friend can look into.
__________________
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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06-30-2008, 01:57 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Trying again and hoping someone has information.
Thanks,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
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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06-30-2008, 11:40 PM
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#6
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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hope this is helpful
I have no personal experience with him, having only heard him talk at other's lectures, but he operated on my mother twice while he was at UCLA--once for a cancerous condition(early stage, resulting in hysterectomy) , once for a noncancerous one. I was out of the country at the time, but she recovered well from both. I understand that he is considered quite an authority on a variety of OB-GYN malignancies.
http://med.stanford.edu/profiles/vie...Jonathan_Berek |
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07-01-2008, 07:38 AM
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#7
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Sorry I can't help your friend with any doctor referrals Mary Jo, but I will be praying for her. Did she have a hysterectomy since she's Brca1 positive? I wonder if that's connected to her peritoneal cancer? Keep us posted as to what she finds out at the Cancer Centers.
My other prayer is that more young people in med school will enter the field of oncology and oncological research - and that they won't be turned off by insurance problems and malpractice suits.
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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07-01-2008, 09:15 PM
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#8
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Senior Member
Join Date: Jul 2006
Posts: 59
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Marejo,
have her post on the message Boards @ www.facingourrisk.org. Everyone there is BRCA+ and they are hooked up with some of the best Gyn oncs familiar w BRCA protocols and treatments,tell her to say Soccermom sent me...Hugs marcia |
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