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Old 03-05-2015, 03:09 AM   #1
JessicaV
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Posts: 206
Re: What about non-orthodox "cures"? Have you tried?

Dear sisterofher2+, I am not sure if you understand how cancer metastasises? HER2+ breast cancer is highly prone to metastasizing, so is a bit like melanoma skin cancer in this way, where some other breast cancers are much less prone to metastasizing like common squamous cell carcinoma. When a cancer that is highly prone to metastasizing changes from an "in situ" cancer to an invasive cancer, it starts to slough off cancer "seeds" known variously as metastatic cancer cells, cancer stem cells, stem-cell-like cancer cells. They can transform back and forth from very primative menenchymal cell form to a very typical epithelial cell form.Some of these cells stay in the tumor They are then capable of changing the gene-line of the tumor cells to ones that use different pathways enabling them to get around pathways initially blocked by drugs or radiation. This makes the next generation of tumor cells resistant to that specific drug or treatment. Some of these cancer seeds float off in lymph fluid or blood, and are not always able to be targetted by any treatments because they don't divide much at that stage. They hunt out suitable spots in mostly in brain, liver, lungs and bones, and grow into metastatic breast cancers. Luckily the new drugs for HER2+ cancers including herceptin, perjeta and others are good at seeking out these baby metastatic cancers where cells are dividing quickly, and killing them off. Each of the new ones targets diff pathways which gets around the resistance problem.
This metastasing process is the biggest risk that confronts all of us with HER2+ breast cancer, whether or not we already have metastatic cancer. This is what will kill us if we are to die of this cancer. HER2+cancer used to kill over 50% of those who got it, even when caught very early, whatever the patient did in terms of good personal health care, diet, exercise, apricot kernels etc. Now with the new drugs, that drops to between 2% and 20% depending on diagnosis. For those who are ER+ Tamoxifen and Aromase Inhibiters and the new hormone treatments that cut the estrogen in the body down to a minimum, modifying the hormonal environment means the cancer seeds are much more likely to fall on infertile ground where they cannot grow. The 5yrs/10yrs issue I understand is about how long changing this hormone environ continues to produce a big drop in new metastases. I had a friend who got a dozen golfball sized metastatic tumors in liver and lungs within months of stopping tamoxifen after 6yrs on it. Luckily with intensive weekly chemo and herceptin and hormone treatment for a year, they have gone again. But it demonstrated quite clearly for her what a difference that hormone treatment was making. Everyone is different and the diff it makes depends on how strongly ER+ one is.
So even if some of these alternative treatments can help prevent primary cancers, unless they can provide powerful protection against metastatic cancer stemcells, they are not going to be nearly as much help to your sister as the Herceptin-family of drugs, the chemo most effective in combination with those, and the estrogen-reducing drugs.
Your sister may well, like me, be currently mostly concerned with the inner battle to put aside fear when standing in the shadow of death which is what it means to have this sort of cancer. For me, I have my treatment plan, I have good medical team, I really don't want others revamping this for me, because I have other places I want to be putting my energy. I strongly suggest you ask her to tell you frankly and honestly how you can be the best sister to her at this really tough time for her. It is really important to be sure you are helping her not hindering, and that you keep checking with her that you are not getting it wrong. This time could bring you and your sister close, or it could divide you in a very sad way if you get it wrong.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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Old 03-05-2015, 07:37 PM   #2
Kkmom
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Re: What about non-orthodox "cures"? Have you tried?

Jessica,
I just want to say "Amen" to your post. I have read more than I every wanted to know about breast cancer, but your info is one of the best. Pam
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[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 10 Years Out!! - December, 2022
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Old 03-06-2015, 12:05 AM   #3
Jackie07
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Location: "Love never fails."
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Re: What about non-orthodox "cures"? Have you tried?

In response to the question: I would really appreciate any advice on this matter. You see, my sis is now in total denial that anything natural works, because her oncologist told her smth like "if anything natural really worked, all the people would have been cured and remained cancer free"。

I've experienced exactly the same thing after my brain (tumor) surgery in 1990. It was a huge Central Neurocytoma that had been growing with me for probably 30 years. It was too big, it had to come out! The surgery took 23 hours ... Oldest Brother was the representative from overseas where all my family/relatives live. It so happened that my neurosurgeon is of the same ethnicity as me. Consequently, when my (Gringo) husband brought to his attention that my Oldest Brother was using Chinese herbal ointment to massage my stiff neck and shoulder (due to 10-day semi-comatose), the neurosurgeon's response was simply: "They believe in that sort of stuff."

Fast forward to 2003, when I was diagnosed with breast cancer. (Right, it's all my fault - as my family members (Father, Mother, 3 older Brothers and 2 older Sisters) would tell you: "She never eats right, never goes to bed in time, never listens to us ..." Then in 2007, right around the time when I was diagnosed with recurrence, they shielded the news of 2nd Brother's colon cancer from me. He was the healthiest person in my family, thus my most harsh critic. Since I'd had some training in medical librarianship, I did some digging via the Medline Database. 'Brain, breast, Non-Hodgekins Lymphoma (Mother was diagnosed/treated in 1998), and colon cancer' - and I found a cluster called 'Lynch Syndrome'. Ah Ha! It's in our genes. There're some problems there that cause the cells not able to repair itself properly during cell division.

I felt exonerated!

It's natural for family members to be concerned and want to help any way they can. Oldest Brother is also an amateur fortune-teller ... Fortunately I'd had some training while a volunteer counselor, otherwise, it would have really been tough (if not impossible) to handle all the advice/quarrels while trying to face my own challenges.

Be supportive, and be available. Your sister definitely appreciate your standing by her side. I know I did and still do.
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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 groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 03-06-2015 at 01:52 AM..
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