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Old 03-19-2014, 02:03 AM   #1
mjm
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Join Date: Feb 2014
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Hi from an HER2 Daughter Newbie

Our family's rollercoaster started 2 months ago when my beautiful mum was diagnosed with breast cancer. The first few days were an absolute nightmare, I thought it was a death sentence, and soon. Although i'm an adult, my Mum and I are very close, and I desperately want her there when I have children, when they turn into terrible teens, and when she is old and grey.

Having learnt more about her prognosis, and with treatment underway, I'm much more optimistic about the future. However, I was wondering how others deal with that 'what if' of recurrence?

And does anyone have any tips for getting through chemo (TCH)?

And does life ever start to feel normal again? It feels like cancer is never far from my thoughts.

Mostly just wanted to say hi though to any other HER2 family members (or people with BC themselves) on this site.
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Old 03-19-2014, 04:37 AM   #2
'lizbeth
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Re: Hi from an HER2 Daughter Newbie

Welcome to the Her2 board.

A cancer diagnosis can be scary until you start learning more about what to expect. I'm happy that you are feeling more optimistic.

The what if is the most difficult part emotionally. But your mother is not completely powerless in preventing recurrence. Studies have shown reduction in recurrence rates from exercise, meditation, breast cancer vaccine trials, support groups, etc. Eating healthy, limiting alcohol, fatty foods are helpful too.

I worried a lot over the first few years, then less and less. Finally after my breast MRI last fall I just stopped worrying. I've reached 6 years with no recurrence and it feels pretty good.

I still think about cancer a lot, but it is more of a what can I do to make things better for the next generation of cancer patients.

I will defer to others on the for tips about dealing with TCH. I'm too much of a rebel and strongly feel less is more when it comes to chemotherapy.
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Old 03-19-2014, 04:56 AM   #3
mjm
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Re: Hi from an HER2 Daughter Newbie

Thanks 'lizbeth. It's so nice to think that the worry will fade away in time. I try not to dwell on it, but sometimes its just there.

The advice about being proactive with lifestyle factors is helpful too. Mum does some of those things, but others are new to us -bc vaccine trials I've only heard the tiniest bit about lately on the news here in Australia-sounds interesting. Do you have any more info on vaccine research?

Congratulations on the 6 year milestone-that's awesome. I gather with HER2 the risk of recurrence drops a lot over time, so hopefully a bright, recurrence free path ahead.
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Old 03-19-2014, 05:05 AM   #4
'lizbeth
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Re: Hi from an HER2 Daughter Newbie

Hmmm . . . Australia. I'm not so hip on trials there. Perhaps AussieGirl is in the know on the latest studies down under.

I just saw a US trial post treatment for an oral KI67 inhibitor. I have been meaning to search through the latest studies. If I find any locations in Australia I will post.
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Old 03-22-2014, 06:31 AM   #5
Jackie07
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Re: Hi from an HER2 Daughter Newbie

Hi,

As a brain tumor survivor (twice since 1990) and breast cancer survivor (twice since 2003), I can tell you that life is just like some guru (in a move?) had said: "There's no normal life - there's just life."

Getting a cancer diagnosis is always a shock. Sometimes it's harder on the caregivers. Hubbie had had two stents put into his heart arteries at a young age (20 years younger than most stents candidates), and I think my never ending medical crises had had something to do with it. Though he does have a family history of coronary heart disease and very bad eating habit. He's been doing fine for the past 12 years following doctors orders to take his meds and change his diet plus walk everyday for at least 30 minutes ...

Take good care of yourself (so you can take good care of your loved ones) and talk to a hospital social worker to get all the available resources. I'm sending you and your mom good vibes.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
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Old 04-08-2014, 12:14 AM   #6
mjm
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Re: Hi from an HER2 Daughter Newbie

Thanks foor the support xo
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Old 04-08-2014, 11:30 PM   #7
Adriana Mangus
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Re: Hi from an HER2 Daughter Newbie

MJM,

As a mother, is so nice to hear you're taking care of your mom,
am sure she appreciates you every moment you are with her.

Try not to think too much about anything that relates to cancer, I know easier to say than done, but there are yoga classes you can join, meditation will also help you with the fear associated with having someone so close to you dealing with this disease at the moment.

Thank you for now being part of Her2+ patients, advocates and caregivers, we care about you and your Mum, please keep us posted.

Sending you good vibes your way..beautiful Australia.

Love,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 04-09-2014, 02:06 AM   #8
mjm
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Re: Hi from an HER2 Daughter Newbie

Hi Adriana, thanks for your lovely message.

I was just starting to enjoy feeling like I had my head clear again to focus well on my phd research when my own "just to be on the safe side" ultrasound showed up a new (and different from the rest) lump! Followed by fna, core biopsy, more testing of the core biopsy results (eek!), then an excisional.

Luckily it was benign, but I'm sore and fatigued from the excisional biopsy (and kind of amazed they can remove so much tissue from a small boob and make it look pretty ok by just readjusting the rest of the tissue). And really looking forward to being able to be a bit more useful again - can't carry anything heavier than a cup of tea for Mum at the moment. Oh well, grateful it's just a roadbump this time

Dance classes are usually my escape from overthinking, so 6 weeks off is frustrating, but some gentle yoga stretches sound like a great idea.

Here's to the 'new normal' that's gotta be just around the corner now
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Old 04-09-2014, 02:17 AM   #9
mjm
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Re: Hi from an HER2 Daughter Newbie

PS I'm in awe of the grace and strength you ladies show. I hope you don't mind me having a little whinge about a measly biopsy surgery when you have all been through so much more.
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