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Old 06-25-2008, 07:58 PM   #1
Joan M
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Surgery/MCC-DM1 trial

Just want to update you on what's going on with treating my lung tumor.

I've gathered all the information and when my onc comes back from vacation on July 7, Ill discuss it with her and then make a decision.

It seems to be between doing surgery or the MCC-DM1 trial (if the trial is available to me).

I met today with the surgeon at Sloan-Kettering. She said that if I wanted, she would do the surgery. But she suggested trying chemo first, based on the medical onc's recommentation, and that I could always do the surgery if the chemo wasn't working.

She would do a lobectomy of the left lung. The surgeon said that a fairly large wedge had already been taken and that a lobectomy would not be that much more and be a lot more effective than another wedge. The idea of a lobectomy kind of frightened me. I was thinking, what if the cancer spreads to my right lung, then I don't have a lot of lung left to breathe.

Tomorrow I'm going to call the MCC-DM1 trial study doctor and find out whether it's still open and how it works. I'm a little confused about that from reading the protocol.

The trial information is on the MSKCC website.

It's not an easy decision. There are good arguments on both sides, which some of you ladies have pointed out.
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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 06-25-2008, 09:04 PM   #2
Faith in Him
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Hi Joan,

It sound like your surgeon is really supportive. I will be praying for you as you go through this decision making process.

Hugs,
Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 06-25-2008, 09:19 PM   #3
vickie h
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Joan,
You are in my prayers. Love, Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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