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Old 03-15-2015, 10:33 PM   #35
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: early Christmas present--10 yr overall & bc specific survival results just publis

I sympathise with the concern about having to have chemo too if you want trastuzumab, and the principle of a blanket treatment for all that is not fine-tuned to the best needs of the individual patient.

I think part of the reason for this is that the only treatment regimes the oncologists can offer with any sort of confidence are the ones that have been tested out on hundreds of people over quite a few years ie in large trials. If the oncologist changes any part of the regime from what was used in the trial, they are immediately using a totally untried treatment which could be either useless or dangerous. When they stick to what has been shown to be effective for someone like the patient in question, they can know a lot more about what side effects to expect, what tests to administer etc. They know the chances of it working to get rid of the cancer in question. My onc says that reducing dosage of anticancer drugs to less than 86% of the recommended protocol significantly reduces effectiveness.

The other part of the problem is that ethics committees who have to approve research trials (I understand the FDA uses this process though maybe they call them something different)generally will not permit any trial to start unless it offers all participants a good proven treatment. So it would have been initially hard for researchers to get approval for a herceptin-only treatment, until the drug becomes so well recognised as a good proven treatment on its own for patients with a particular kind/size/etc of tumor. In their wish to protect us the watchdogs slow down the approval of the sort of treatment you advocate.

The more different trials are done of different combinations, and the more the researchers manage to trial different protocols/regimes of drugs etc, the more options they can use with reasonable confidence they will work.
Carboplatin and Taxotere were used together with Herceptin in the big trial that finally proved there was a good chemo alternative to the heart-damaging andriamycin type drugs. Those particular chemo drugs were chosen because there were helpful interactions between them and herceptin and the HER2+ tumor that made the combination more effective. They were not just picked at random.
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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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