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Senior Member
Join Date: Apr 2014
Posts: 206
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Re: What about non-orthodox "cures"? Have you tried?
Hi, How lovely of you to care so deeply about your sister's happiness and health.
My cancer is not ER+ so I do not take tamoxifen.
However I have good friends who do. I put your question to them and somewhat belatedly, here is what they told me. I hope it helps.
The two main and most distressing initial symptoms they describe are hot flushes/menopausal symptoms, and joint pains which can be agonising, along with concern about their bones.
Here's what they do about them.
One friend has several fans in the rooms she spends most time in, so is capable of creating an incredibly strong blast of cool air that she can sit in the middle of. Her grandchild loves it too! She says it really does help and is such a relief but also fun.
For the joint pain, a friend who gets bad arthritic pain too recommends 1500mg daily of glucosamine sulphate (preferably the Dona brand crystaline type which she gets through Ebay or Amazon). Her oncologist said this is fine, and also told her to take VitD 1500units a day, plus watching to see she gets enough calcium at diff meals to her main iron intake, plus the normal supplements of minerals and vitamins. This has greatly reduced her joint pain and worry about bone density etc.
The key point they tell me is that unless they can cut the estrogen in their body by either Tamoxifen or a very similar drug, or by surgical removal of ovaries, their bodies are perfect petri dishes for their type of cancer to regrow. And even though the side effects are bad, and they don't yet want this surgery, they want to live and keep on living. They prefer take these artificial pharmaceuticals which are part of a proven system than to risk their lives depending instead on alternative methods that are not yet properly proven scientifically.
Each has to make her own choice, and sometimes it is hard for our loved ones who disagree with our choices and think we would be much better off following their choice. I would urge you to keep an eye on what new alternatives are arriving in the way of new drugs and scientific research in this cutting edge area. Maybe a better choice you are happy with too will arrive tomorrow.
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 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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