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Old 10-06-2014, 01:05 AM   #1
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Join Date: Oct 2014
Posts: 2
Question Newbie here

On December 31, 2013 I received that dreaded phone call.. .it's cancer. I was diagnosed with stage 2, grade 2 Invasive Ductal Carcenoma. I did have a mastectomy on my left breast with the tumour being about 5 cm. I have completed my chemo treatments of AC/TH but have now been put on hold from continuing just the Herceptin as my last MUGA was not great. I went from 55% down to 40% so oncologist told me that's it, no more for you. I still my port-a-cath in as now I'm being sent to a cardiologist which I will be seeing this coming Thursday. Really concerned about not getting the full Herceptin of one year (only 4 treatments!). Terrified of recurrence. Am hoping to have other breast removed as a precaution, but everything is on hold due to bad MUGA results! ARG... on the good side... my hair is starting to grow out, I actually have fuzz all over my head now (last chemo was Aug. 9th!!!) so it does take quite awhile for it to grow in! Otherwise am doing okay, still have headaches all the time, neuropathy is hands is so much better, but not so much in feet. Anyone else in this position of only getting 4 Herceptin instead of the full year?
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Old 10-06-2014, 01:13 PM   #2
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Join Date: Feb 2014
Location: California
Posts: 439
Re: Newbie here

Mouser from my understanding they will reject your heart function again in the near future and may possibly start the herceptin again. I know there have been a few women who had to stop and start again. Others will chime in and help you through this. My Muga scans are slowly dropping but nothing drastic . I have 5 months left of Herceptin and sit and hope that my heart can continue to handle this treatment .
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 12-17-2014, 03:57 PM   #3
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Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Newbie here

That is the typical way a low MUGA is handled while on Herceptin. I would be sure to let them know that you want to finish the treatment and be sure they are on top of redoing the muga. Many women's heart function will go back up pretty quickly if they take a break from the Herceptin.
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Old 12-17-2014, 05:57 PM   #4
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Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: Newbie here

You may want to look into CoQ10 as a supplement.

If you do a seach on the site there should be threads that discuss it.

Best wishes,
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
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Old 12-21-2014, 09:06 PM   #5
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Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Newbie here

Have you talked with your onc about going off it for awhile and monitoring your MUGA? I know for some people the MUGA will go back up pretty rapidly and they can try more Herceptin. Worth a try maybe. I also take CoQ10 twice a day; 100 mg each. My endocrinologist recommended this. My onc also advised me to take folic acid every day. Vitamin D and fish oil are also supplements to consider.

I have been on Herceptin for 5 years almost and so far my MUGA results have been fine.
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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