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Re: Recurrence confirmed- need help!!
Thanks Penny! I hope your doctor will find the right treatment for you! i am surprised to learn so many had skin involment. I don't carry the gene and already had a mastectomy. Did you have reconstruction done? So this wil not be an option for me. Some of us unfortunately go to stage 4 so soon for all the surgeries we have had. Sometimes I wonder is it better to be stage 4 off start than have one year Ned without breasts? I know I wanted a mastectomy anyway. I would so relate my recurrence with a lumpectomy!
If I look at it in a positive way. The recurrence gives me a chance to find a more effective treatment regime. I still have doubts about my oncologist decision not to change or add drug when there were 10 positive nodes after 4 TCHs . He said too many chemos are not good for me . I didn't insist on getting a second opinion which is my own fault. It is so important to be your own advocate!
I read on breastcancer.org that some are given xleloda and tykerb. Some are
Given the big chemo drug. I don't know if my surgeon wants to remove the affected skin only. I will need to get my expanders removed or drained since there won't be enough skin to cover the expanders. Next week will be a busy week for me. I have been taking supplement and herbs to prevent recurrence it still came so fast!
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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